PERSONAL Stories

Navigating High School and College With Your Young Adult Low Vision Child

The “experts” never say anything about how your role as a parent changes when your child becomes a young adult. Out of all the books and articles I have read about parenting there was nothing to prepare me for my young adult child. Having 4 boys, the young adult years has been one wild ride! Now, let’s add in the complexity, stress, worry, etc. for a child with low vision, where there is no treatment or cure, and then let’s fast forward it to their young adult years…

Honestly, my intent in this article is not to provide a “success plan,” or a checklist, or even some quantifiable data; but rather, I’d like to share my story with hard lessons learned as well as many unplanned or inadvertent “wins” that we’ve been through - not only in high school, but during the college years.

Collin was diagnosed with X-Linked Retinoschisis when he was just turning 4 years old and it rocked our family to the core. While Dr. Trese compassionately told us that he was working on a synthetic-schisin in the Pediatric Retinal Research Lab (PRRL) that could be a potential treatment, [results were] years into the future and no clinical trials had even started. With my wife being a special education teacher, we decided to home school Collin because we felt we could educate him better and be more responsive (with his eyesight changing and degrading) than the public schools could. IEPs (Individualized Education Programs) were taking months to complete and accommodations were always a negotiation. By the time he got to high school, he was adamant about going back to public school as we were “ripping him off” on the school experience - a chance to make friends and be “normal,” as he put it. We gave in because we could see he was extremely unhappy, knowing that we could always pull him home, if need be.

Some of the social challenges for Collin were in initially making friends at the beginning of high school. While we wanted him to wear glasses both for his astigmatism as well as protection of his eyes (we can’t tell you how many times his eyes were saved because he was wearing glasses when he was younger), he would take them off and stick them in his backpack “because glasses weren’t cool and they are calling me a dork.” We never won that battle and even today he won’t wear glasses in public. One of the biggest issues that we didn’t realize was Collin struggled to see facial expressions at normal social distances. Understanding non-verbal cues, gestures, or facial expressions are critical in a social environment, especially in high school where the perception of what your peers think about you matters. This presented challenges in making friends and maintaining social interaction and really was frustrating for Collin. 

Another set back was with Assistive Technology (AT). As prepared as we were for the IEPs, if the low vision specialist is inexperienced, the appropriate services were often missed. The IT policy took a while (about 2 years) to change to allow iPads in the classrooms. We even offered to buy the iPad if they would just allow the system to be on the network. During his junior year, the AT Tech came to an IEP meeting and offered a school-purchased iPad. We were excited, but Collin said, “Why would I use that?  So I could look even more blind.” Later in high school, Collin admitted that he didn’t care that he was different, but he didn’t want special treatment and he doesn’t like admitting when he can’t do something. He refused to use it and I still can’t wrap my head around the social aspects over-riding the technical advantage.

Playing contact sports: Collin was a very active boy and the concerns of trauma to his eyes or even his head resulting in degraded vision, detached retina, or blindness wasn’t something we, as parents, could accept. Dr. Trese had a bunch of examples where his patients lost vision because of playing a contact sport and even a pet dog wagging his tail had hit a patient’s eye and caused a detached retina. The worst was on our annual extended family trips to Walt Disney World. Based on the vibrations and G force of some of the rollercoaster rides, Collin wasn’t allowed to ride the more violent roller coasters. With huge regret, and seeing the hurt on his face, I had to come up with a plan as he so badly wanted to ride the roller coasters with his cousins. To make it hurt less, I or one of his uncles, would take him to a gift shop while the cousins were on the rollercoaster and he could pick a gift. I knew he wasn’t happy, but he didn’t complain.

Driving a car: Not knowing how much his vision would decline, we searched out a local Optometrist who had experience assisting with eye exams and knew the Virginia Department of Transportation’s rules. Collin was fortunate to have good enough vision to receive a day-only license. This was an important milestone for Collin as a young 16 year old. We were prepared for the worst, but were thankful for a small “win” with driving. Additionally, while not being able to drive at night really upset him (especially senior year and into his college days), Collin had developed a strong core set of friends. They loyally drove him around at night and never excluded him even when it was inconvenient to drive him home. While I was ready to pick him up at any hour, we are very grateful for his friends and how they don’t treat Collin differently. This was another “win” and allowed Collin to have some autonomy. It was being able to drive that opened up his interest to working on cars. He immersed himself into understanding car and truck motors and systems and began working on modifying his hand-me down truck. Seeing his interest in vehicle maintenance, we saw this as a great opportunity to foster a passion with a skillset. As he acquired some more tools, we saw his interest in automotive maintenance go from changing oil to more complex tasks like replacing brakes and starters to a culmination of installing turbos and rebuilding engines.

While Collin was fixing his friend’s cars and trucks, we convinced him to apply to college and with a 3.7 [grade point] average he was able to get accepted to Old Dominion University. He decided he wanted to be a business major. I researched the office of disability and we found out it was very different than high school. While establishing accommodations and sending a copy of his high school IEP, it was up to Collin to meet each professor and explain his accommodations. This negotiation per class was the last thing Collin wanted to do. He never wanted to receive “special treatment” and this discussion of accommodations for his eyesight  was uncomfortable. For some classes, it didn’t matter where he sat, the writing on the board was just too small. These struggles in the classroom left Collin frustrated and ready to be done with college. After 2 semesters, Collin was determined to try something else.

I wasn’t happy that Collin wanted to quit college, but he had a plan and now he was going to be an electric technician. Heck, he’d been wiring up stereos, woofers, and bass speakers in his friend’s cars for years. Again, Collin was determined and he worked all of fall 2022 learning the trade. One day he came in and said he was thinking about going back to college. I asked why, and he told me a few reasons, and then he said, “Dad, I really can’t see some of the differences in the colors of the wires.” So, I said, “OK, let’s try college again.” While he was frustrated and felt like he was failing, I took this as a small “win” because I saw him not giving up and looking for the next path forward. His new plan was to take classes asynchronously where he could zoom in on the computer screen to be able to clearly see, as well as repeat sections that he missed because of the size font or diagrams on the slide show were too small. This has worked better than in-classroom courses.

I could continue with many examples of how navigating through high school and college has been challenging, but I’ve seen Collin grow with advocating for himself, albeit ever slowly. Nowadays, he’ll agree with me that self-advocating is better to start in high school so by the time you’re in college it comes naturally to interact with professors. I’ve enjoyed watching him develop his own autonomy and plan for his life and, reluctantly, we had to make sure we kept our white-knuckled concerns under the table so as not to overshadow his “never quit” spirit - this was difficult for us as A+ parent-personalities. Recently, we just started talking about summer internships and I am hoping this will be the next leg of our journey as he advocates for pursuing internships which may yield a follow-on job after college. I’m sure there will be so much more of the story, so stay tuned…  😊

 ~ Chuck Walls, Parent, PRRF Board Member and Family Advisory Committee Member

The Loneliness of an Orphan Disease Diagnosis

A rare disease is defined as any disease that affects a small percentage of the population, often fewer than 200,000 people in the United States.  Oftentimes, due to the rarity of these diseases and lack of a large patient population, gaining support and resources for treatment options is a challenge. Receiving a diagnosis of one of these rare diseases can leave an individual or family with a very isolated and lonely feeling. This was our experience after receiving the news that our daughter, Aria, had been born with a rare retinal disease.

When Aria was about two months old, we noticed that her eyes were doing a rapid back-and-forth movement that seemed to be increasing in frequency. She was so little that I simply thought her eyes were still adjusting, until one day I watched one eye drift from top to bottom, with no control.  We then decided to address it with our pediatrician. Although they did not recognize any issues and seemed unconcerned, we pressed them to see a specialist, which brought us to our first appointment with a pediatric ophthalmologist. Upon her first exam it became immediately apparent that something was very wrong. The ophthalmologist pulled up a picture of Aria’s eye on a computer screen and explained to us that all the markings we saw on the screen were areas of abnormalities in her eye. I remember saying to him “But that’s her entire eye?” He excused himself and stepped outside to make a phone call. He returned and said he was able to get us a last minute appointment the following day at Associated Retinal Consultants to see Dr. Michael Trese. He assured us that we were very fortunate to be seeing one of the best pediatric retinal specialists in the world. I remember thinking to myself, “doesn’t it take months to get in to see a specialist!? Why is it so urgent to get her in?” I felt sick. The next day we met with Dr. Trese and he confirmed that he did see a retinal detachment, discussed several possibilities of diseases that could potentially be the culprit and we were set up for Aria’s first exam under anesthesia the following week. Everything happened so quickly. That night my husband and I sat up Googling all the different possibilities and overwhelming ourselves with information. The following week, she was examined under anesthesia by Dr. Capone and received her official diagnosis of FEVR (Familial Exudative Vitreoretinopathy). We met with Dr. Capone in a small room inside the children’s surgery center where he drew us a diagram of her eye and began detailing what he found. I was hoping that my husband was absorbing everything he said because, if I’m being entirely honest, I didn’t hear much after he gave us her diagnosis. All I heard was, “your daughter was born with this disease and there is no cure for it.” After that, my emotions got the best of me. Dr. Capone concluded by telling us that he wished this would be a one-time visit for us, but instead this would be a journey for Aria and for our family.  I was sobbing when I returned to the waiting room and then went to be with Aria as she came out of anesthesia. Another mother saw how distraught I was and was kind enough to offer her phone number in case I needed someone to talk to. And I really did need someone to talk to.

I was a first-time mom, still adjusting to nursing, sleepless nights and everything else that came along with being a new parent. I had never heard of FEVR, nor did anyone in our family have any major eye related issues. The news that Aria was born with a progressive retinal disease, and the fear of what that meant for her future, was overwhelming. The knowledge that this is a genetic disease and how that may affect our future children also terrified us. When all of this came out of the blue, we weren’t prepared for it…..and we were devastated. After dealing with the initial sense of shock, a deep sense of loneliness began to set in. Friends around us were starting their families also, and everyone was having healthy babies…..why was this happening to our baby!? I was heartbroken. I didn’t feel like I had anyone to relate to or who understood what we were going through. I reached out to the mom who had given me her number in the waiting room and was so grateful to talk to her. Although our children had different diseases, I still appreciated the opportunity to speak to someone who understood how I was feeling. I desperately needed to connect to other families and began seeking ways to do so. I joined a Facebook group. I inquired with Dr. Capone to find out if there was any kind of organization I could get involved with or opportunities for fundraising. I wanted to feel like I was doing something to support my daughter and other families affected by blinding retinal diseases.

Over the years, our journey has involved several procedures for Aria, including the placement of a scleral buckle on her left eye for partial retinal detachment, laser treatment, and many exams under anesthesia. In February of 2016, Aria experienced a bout of glaucoma, which resulted in an ER visit and ultimately the depletion of the vision in her left eye. It also included Aria being asked to be the Honored Hero at the first annual Hope for Vision Walk! This is such a special memory for our family and the number of people that showed up to support us really touched our hearts. We are beyond blessed to be surrounded by so many amazing family and friends who continue to participate in the Hope for Vision Walk and we look forward to the event each year.

Aria is now eight years old and enjoys dance class, Girl Scouts and drawing. Anyone who knows Aria knows that God equipped her with an immeasurable personality. Aria is confident, big-hearted, creative and absolutely hilarious. For the first time in her life, she seems to be growing in her awareness of her disease. Only recently, she has begun saying things to me like, “Mom, I don’t think anyone in our neighborhood has eyes like me,” or “Mom, I don’t think anyone in my school has eyes like me.” “Mom, can you set up a playdate with someone who has eyes like me?” Again, my heart breaks. I now recognize that Aria is experiencing a feeling of loneliness because she doesn’t have anyone she feels she can relate to. She has such confidence and embraces being unique. But I also don’t want Aria to feel like she’s different in a negative way. I want to help Aria connect with kids her age so she doesn’t have to feel lonely, but because this disease is so rare, we have had little success. Once when she was only 2, someone from our FEVR Facebook group announced that they were coming into town for an appointment at Associated Retinal Consultants, and invited anyone local and interested to get our kids together and meet. On a recent trip to Disney, we encountered another family whose daughter had a single partially closed eye just like Aria. The girls spotted each other across a crowded restaurant and were immediately intrigued by one another. We had the opportunity to introduce the girls, and although we discovered they were dealing with different issues, they were so happy to meet one another.

In the past few years, I have become involved with the Pediatric Retinal Research Foundation and the Family Advisory Committee, helped with fundraising efforts for the Hope for Vision Walk and other various events. I am beyond grateful for the work of these groups and their commitment towards a shared mission and quest for a cure. I’m excited to be a part of the FAC and a witness to the rapid progress that has taken place in the past year. The FAC is focused on building a community of support and resources for those affected by rare retinal diseases. They are working to support this community by creating networking opportunities, providing education, fundraising efforts and emotional support.

As parents, we wish we could protect our children from everything, fight all their battles and endure all their hardships. Obviously and unfortunately, we cannot. We can however help prepare them, support their needs and quite simply, love them. For me, getting involved has been a part of the healing process and will continue to be. I encourage you to get involved in any way that works for you. Participate in fundraising and consider putting together a team for next year’s Hope for Vision Walk. Join the Family Advisory Committee Facebook group or tune into the new “Through our Eyes Podcast.” And don’t miss the opportunity to participate in the upcoming Family Connection Conference in January. This year’s virtual conference will focus on education for parents and caregivers, provide research updates with the doctors, and will include speakers and breakout sessions. There are now more ways than ever before to get connected. The hope is that these opportunities will help bridge the gap between families and individuals who feel alone, and create a community of support for those affected by these rare retinal diseases. We are not alone in our struggles, and together, we are capable of so much.

Lisa LoVasco, Parent and Family Advisory Committee Member

There’s Something About Twins

There seems to be something about twins that never fails to draw intrigued glances and the question, “Identical or fraternal?” Some claim it is that famed “twin telepathy,” others their shared birthday, age, and grade in school, and still others the relative rarity of birthing multiples. But being a twin myself—and one in especially unique circumstances—I know that the bond I share with my twin sister means more to me than any of this. 

As is somewhat common for multiples, my twin sister Ashley and I were born three months premature in October 2004. I quickly developed retinopathy of prematurity and subsequently underwent numerous surgeries to prevent blindness, and now I possess about 20/300 vision in both eyes with correction. Meanwhile, though Ashley also underwent eye surgery at a young age, she now possesses excellent vision. In a previous article written for the January 2022 Sightlines newsletter, I discussed my own challenges, goals, and personal growth as a teenager with visual impairment, but now I wish to pay homage to my sister, for much of what I have accomplished in my lifetime would not have been possible without her unwavering support.

In my time working with the Pediatric Retinal Research Foundation, I have come to realize that, in families such as mine, there can be a certain amount of alienation between siblings when one has a prevalent disability, no matter their age or other similarities. The disabled sibling may, for example, be excluded from certain activities in which the non-disabled siblings can participate. Stephanie Brennell wrote a wonderfully inspiring article for the July 2022 newsletter that highlights her own young sons, two of whom are twins, and the success they have had in dealing with this very fact. Still, when it comes to such families, any number of scenarios are possible, and they can greatly affect the growth of all siblings involved and the relationship that they develop as they grow older. As Ashley and I are now seniors in high school, I hope that I can offer some insight into how we have both grown as best friends and as individuals and how our relationship remains as strong as it was ten years ago.

Aside from the obvious advantages of being the same age and gender, there are many factors to which I can attest that have allowed Ashley and I to grow so close. For one, my parents have always treated Ashley and me in the same way—they have afforded us the same opportunities, encouraged us to do the same activities, and pushed us toward the same goals. As children we never stopped to consider how we were different; it was more about how we were similar, how we shared the same likes and dislikes, the same friends, the same teachers, and the same experiences. We spent nearly every waking moment together, and (barring the occasional sisterly argument), we always got along. 

There is much to be said about this kind of constant interaction. The hard truth is that visually impaired children are growing up in a world of sighted people, and it is imperative that they be afforded opportunities to interact with and share the same experiences as sighted children. To that end, if it is possible, building supportive relationships with siblings who are near in age should be encouraged, for it can greatly alter the way the visually impaired child perceives the world and the way the world perceives him or her. During my childhood, for example, I was never without Ashley, especially when it came to school—we had classes together, ate lunch together, and played with friends together. As the years went on, I became known not as the girl with large papers and strange magnifiers but simply as one half of the Zuckerman twins. In short, Ashley was the one who made me feel “normal,” and—early on at least—I imagine she was also the one who made me appear “normal” to other kids. She saw past my visual impairment and treated me as she would any other sister, and in doing so she helped other kids to treat me as they would any other elementary-school-aged girl.

That is not to say that helping visually impaired children meet and interact with one another cannot also be immensely beneficial, for it can relieve feelings of loneliness and isolation and offer some reassurance that one is not alone in facing the challenges of visual impairment. In fact, I wonder how my perspective might be different had I met someone like me as a child. That being said, I personally do not recall ever longing to meet another visually impaired girl when I was younger. Instead, I was content to know that I had my twin sister who understood my disabilities and my insecurities, and I was—and still am—more focused on adapting to the sighted world and interacting with sighted people.

Now, as Ashley and I enter our senior year of high school, our relationship has taken on a whole new meaning. We still have some classes together, we still eat lunch together, and we still have many of the same friends, and still Ashley remains my biggest supporter and most trusted confidante; yet our lives are swerving in very different directions as we build our own identities and pursue our own goals. Though part of me knows that I cannot afford to be so dependent on her any longer, I still cannot imagine what my life will be like in a year, for then I will be in college, confronted with new surroundings, new people, and new challenges, and—solely because of my visual impairment—nothing terrifies me more. Truthfully, for as long as I can remember, it has been a dream of mine to share a dorm with Ashley, and that is not only because of how much fun it would be to decorate our room together. As this is not likely to happen, though, it will be up to me to establish my own identity at the school of my choice, in addition to tackling practical challenges that come with learning a new environment. That being said, whether I am preparing for my first day of college classes or my first day at a new job, I know that Ashley, who has never failed to understand—or, to the best of her ability, attempt to understand—and support me when I find myself in an unnerving situation, will be merely a phone call away.

I truly feel that, were it not for Ashley—and for my parents, who encouraged Ashley to help me in these ways—I would not have been so readily accepted among my peers throughout my school career and would not have adapted to the sighted world so easily. I hope that every child who is disabled in some way can develop this sort of relationship with a sibling, for it is perhaps the most valuable—or invaluable—relationship that I have. I can honestly say that I would not be the person I am today without the incredible friendship and steadfast support that Ashley has given me over the years.

~ Jennifer Z.

Sibling Revelry

“If you want to know how to treat a child with special needs, look at their sibling…they will show you.” I have no idea who wrote this quote, but I really like the sentiment. At the same time, I hate the phrase “special needs” in terms of a specific population of people or description of my son, in particular. I get lazy and do use it because it is such a widely accepted term, but I don’t like it. None of us have needs that are otherworldly. We are all unique and special in our own way.  Those who have disabilities or learning deficits may require an extra level of support or accommodation, but whatever their needs may be – they fall within the realm of normal human interaction in a civilized society. There is no shame in possessing a disability or differing abilities, and many experts recommend using the term “disabled”. I’ve been pondering this issue for quite a while and haven’t come up with a brilliant new way to re-phrase or re-frame things, so I’ll save that endeavor for another time and move on to the bigger picture.

The most unexpected and jarring news I’ve ever received was delivered by a medical professional, but it was not delivered by the ophthalmologist who delicately informed us our infant son was blind. It was delivered by the ultrasound technician who nonchalantly mentioned two embryos as I was lying on the exam table at the high-risk maternal medicine center. She thought our normal OB-GYN had already informed us, hence the reason for our evaluation that day. In fact, we were there because I was over 35 and considered geriatric in pregnancy terms, and because I had needed an emergency c-section when our first son was born. In any event, we were floored, and she was mortified for so casually delivering such a shock to completely unsuspecting parents. I was stunned. I was completely overwhelmed. And I was beyond excited. Twins are always best friends, right? Don’t they possess some sort of secret, mysterious, unspoken connection, or communication?  These are things I thought to be true, and they are questions I get asked quite often. I always dread having to answer…no, not really. Not with all twins. Not with my twins. 

Sean was born with Norrie Disease and has been blind from birth. He was also diagnosed with autism around age three and is non-verbal and severely delayed in all areas. There is not a single, simple task that Sean is able to do on his own. Zach is his typically developing twin. He was born one minute before Sean. He is thoroughly obsessed with Godzilla. He loves to read.  He talks on and on and on…and fires off completely pointless questions all the time, such as “what are your four least favorite sports?” For the record, I don’t really like to watch any competitive sport other than swimming. Our oldest son, Will, is going to turn ten in July. He’s entirely too smart for his own good. He has a crush on a girl in his class named Tenley. He wants to learn how to play the trumpet next year in fifth grade band. My boys are all different, all special, and all actively contribute to my gray hair growth and my insomnia.

One thing I’ve worried about endlessly since receiving Sean’s diagnoses, is whether my boys will be close as they grow up. Will and Zach, for obvious reasons, can participate fully and unassisted in endless activities, while Sean can’t. I never want them to take that for granted. And we have recently started having those types of conversations with them. They know, of course, that Sean is different. They know what his disabilities are. But what we are trying to impress upon them is that they could have been born with disabilities, too. I debated for a long time whether I wanted to make this precise point with them.  I’m not trying to use Sean’s limitations as a weapon. I’m not trying to scare his brothers. And I’m definitely not trying to paint Sean’s life as a tragedy. With their young ages, I wasn’t sure if they would really comprehend what I was trying to teach them.  But they are smart boys and they do understand. They understand we are all unique. They understand there are many different types of disabilities impacting many, many people in our community and around the world – but that those with limitations are not less valuable members of society. They understand that, even if you are not born with a disability or limiting condition, you may acquire one at any point in life. They understand they possess abilities and talents Sean does not, and never will.  But most importantly, they understand he has gifts, too. They witness, daily, his sense of humor and his joy. They know how smart he is, and they see how quickly he learns. They get it. And they accept him for who he is.

My three boys can’t all sit down together and play a game of Uno or ride their bikes around the neighborhood chasing the ice cream truck. But they certainly do interact with each other, and Will and Zach have found ways to entertain Sean and have fun with him. They really light up when they see him smile and laugh. Sean loves to sit and listen to The Lion King movie, typically two or three times in a row. Will loves to sit and watch it with him. Zach loves to play with Nerf guns. When Sean hears the clicking sounds, he always reaches out for them. Zach has learned to share and give Sean a turn holding his toy guns so he can explore their parts and functions. Will loves to push Sean on the swing set. All three boys love swimming in our neighborhood pool and Will likes to hold Sean and help him float on his back. Both boys will bring Sean his favorite toys, one after another, until they figure out which he wants to play with. They help fill up his sippy cups with drinks. They hand him bowls of his favorite snacks – Oreo cookies, Veggie Straws, or Doritos. They understand his likes and dislikes. They understand his quirks. They understand what makes him tick, and what makes him meltdown. They are inclusive and they love him.

I hope their soft little hearts never change. I want Will and Zach to grow up continuously expanding their minds and loving their brother unconditionally. It has taken a bit of strategic work on our part, as parents, to help cultivate these relationships between our three boys – but kindness comes naturally to Will and Zach, and I hope they will continue to grow and model acceptance for others. They have been handed such an amazing gift in life. They have been given such an amazing teacher. 

~ Stephanie Brennell

The Resilient Miracle

Becoming a parent is such a gift. Parenting a blind child is difficult, but one thing I’ve discovered, is that I was definitely equipped with an extra pocket of hearts! My daughter, Jules, has taught me patience, compassion, understanding, persistence, determination…….the list goes on! I am absolutely honored to be her mom! ~ Karen Hoogland

“The journey of life is not meant to be feared and planned; It is meant to be travelled and enjoyed.” ~ Unknown

Here’s Jules’ article “The Resilient Miracle”

I was fifteen. It was the first day of my freshman year of high school. I was nervous, overwhelmed, and stressed out. I wasn't confident in finding my way around quite yet. 

My name is Jules, and I am blind. I was born as a triplet, with my brother and sister. To top it off, I was born three months early. Instead of being born in November, I was born in August.  Because I was born premature, I had to be put on a ventilator. I could not breathe on my own. After I graduated from the ventilator, I had breathing assistance with CPAP.  My extremely early arrival in life led me to a realm of issues. I had heart surgery when I was just less than 2 pounds. My heart was the size of a pea. A typical full term baby’s ductus arteriosus naturally closes on its own. Mine, of course, did not. After my surgery, I was put on a jet ventilator. This puffed 425 puffs a minute into my tiny, fragile lungs. As a result of this life-saving technique, it punctured a hole in my left lung. The doctor was able to seal the hole. My uphill journey continued on to more threatening issues. I developed a sepsis infection that most adults can die from. Luckily, my tiny, resilient body tolerated the antibiotics and responded well to them. I then developed Necrotizing Enterocolitis. This is an infection of the bowels that took my triplet brother’s life at 4 weeks old. 

After healing from these obstacles, I was then taken off mechanical breathing assistance and put on nasal canula. I was on 100 percent oxygen. Often, the higher the oxygen level, the more damaging it can be to fragile premature eyes. As a result of this, it can progress to Retinopathy of Prematurity (ROP for short).  ROP is an eye disease that occurs in premature babies when abnormal blood vessels grow and spread through the retina, which is the tissue in the back of the eye. This can cause retina detachment. There are five stages to ROP. Stage one is where there is mild abnormal blood vessel growth, and often the eye disease resolves on its own and the baby regains full sight. Stage two is where there is moderate abnormal blood vessel growth, but no treatment is needed. The disease resolves on its own. Stage three is where there is severe abnormal blood vessel growth, and the blood vessels grow toward the center of the eye instead of around the retina. No treatment is usually involved unless they have a certain degree of stage three which is called "plus disease." This is where the blood vessels of the retina have enlarged and twisted. At this point, treatment is needed, and there's a good chance of not having a retinal detachment. Stage four is where there is a partial retinal detachment. Between the scarring from the bleeding and the abnormal blood vessels, this pulls the retina away from the eye. Stage five is where there is a complete retinal detachment. This is the end of the disease. If the eye is left alone, it could lead to a visual impairment or blindness. The doctors looked at my eyes, and they saw that I had stage one ROP. As time went on, it progressed to stage two. After it went to stage two, I had a grade 3 brain bleed, which progressed ROP further. At this time, my body needed more oxygen, and my ROP progressed to stage three. 

Because of the stage my eyes were at, I had 13 eye surgeries. The first one was a laser surgery, but that didn't work, so I was transferred to a hospital in Detroit called Beaumont. A scleral buckle was placed on my retina. The goal of these surgeries was to save the little sight I had. As time went on, the doctors decided to stop working on my right eye because of too much scar tissue build up. They put their focus on my left because it was the healthier of the two eyes.

At the time I could see colors, objects, and people from a distance away. Between the eye surgeries I had, my mom would take me to vision therapy in Detroit to try strengthening and rehabilitating the little vision I had. Eventually the ROP got to stage five. On my third birthday my mom had woken me from a nap, and she noticed that my left iris had turned brown (which is a sign of detachment).  At this point, I had lost all of my sight. The doctors confirmed it the next day when we drove to Detroit. Dr. Capone told my mom that he couldn’t repair my eye any further. I would be blind.

Now, in the present day, I was walking up to the doors with my sister by my side. I could feel the nervousness in my stomach, like the flutter of butterfly wings. My aid was waiting for me by the front doors of the school (the official title for my aid is a Braille Specialist who brailles things for me). She said hi to me, and then we took a picture in front of the school, which is something we do every year. 

My aid, Mrs. Shultz, has been with me since I was four. She's helped me since Kindergarten, and we've built quite a relationship. 

After we took the picture, we entered through the double doors of the school. Immediately, I heard voices all around me. Lots of voices. The nervousness in my stomach grew.

As we walked to Geometry, I tried to figure out where I was, but it was hard. When I had learned the school the previous year with my mobility instructor who teaches me how to use my cane, there weren't as many people. But now, walking up the stairs, people running around me, I felt overwhelmed. This made me glad that I wasn't alone because I don't think I would have made it to my first class. 

We finally arrived in the classroom, and Mrs. Shultz showed me where to sit. The class passed by quickly. My teacher, Mr. DiLaura, got to know our names. 

Mrs. Shultz followed me to each class to make sure I could get there. The rest of the day passed in a blur, and I was still nervous and overwhelmed. 

The next couple of months were hard. I was constantly nervous, overwhelmed, and stressed out. The school still seemed foreign to me. On top of that, I still had to go to my six classes, do my homework, and do mobility and technology training. I also had emotional breakdowns because of the stress. I struggled with the blindness part of things and ultimately who I was. I wrestled with why I am the way I am.

At that time, I thought I was alone. I thought that I was the only one struggling. But my parents had to remind me that I'm not. I might have different circumstances, but I'm not alone. We all struggle with something. At this time, my principal also told me something that has stuck with me ever since. "You can't go through life alone," she said. Which is true. You can't. You have to rely on the people around you. You have to tell them what's going on, otherwise it will tear you apart. This is one of the valuable lessons I've learned. 

There is one other thing that I've learned from this. Along with the fact that I was struggling with who I was, I was constantly living in negativity. Through all of this, I've realized that I can't live like that. I also can't change who I am, so I might as well accept it. So from that time on, I tried my best to turn every experience into a positive one. It isn't easy, but all it comes down to is a choice. You have the choice to wake up each morning and say to yourself that you're going to stay as positive as possible throughout the day. Yes, we're all human, yes we all have bad days, but there is always something good waiting for you at the end of the bad. There is always a light at the end of the tunnel. 

My life hasn't been easy. I've gone through many experiences that have been hard and painful. But I've come out on the other side, and I'm proud of who I am today. I couldn't be more grateful for the people who've gone along with me on this journey, and for the immense support they've given me throughout the years. 

So, to me, resilience is who I am. I am resilient. I've gone through things that I can't believe I've recovered from, I've survived many obstacles, and I'm still standing here. And I wouldn't change anything I've been through, because everything that I've experienced has made me a better person in the end. 

~ Jules H.

Sources:

What a mobility instructor is: 

•  https://www.teachingvisuallyimpaired.com/orientation--mobility-specialist.html

•  Orientation and Mobility Skills - VisionAware

Full Explanation of eye condition:

• https://www.nei.nih.gov/learn-about-eye-health/eye-conditions-and-diseases/retinopathy-prematurity

Fish Ladder Story: Tanis Hooker

Tanis Hooker was born three months premature. He weighed one pound nine ounces. During his 99 days stay at the Blodgett Hospital Neonatal Unit, he developed severe proliferative retinopathy of prematurity that required cryotherapy to each eye. Tanis subsequently came under the care of Dr. Michael Trese at William Beaumont Hospital where he received multiple surgeries and frequent office visits, over many years, to retain vision. 

Despite his visual and fine motor challenges, Tanis always remained positive through school. He was one of the first prematurely born blind children in the East Grand Rapids Public School System. He blazed the trail for many similarly affected students who would follow him. 

Tanis and his family were one of the original contributors to the Visually Impaired Sports and Activity Day (VISD) held annually in Grand Rapids, Michigan. He loved to ride the tandem bike with his father; they can be seen regularly riding the streets and bike trails in Kent County. Tanis also “anchored” the Tandem Bike and Soccer venues at the VISD for many years. Tanis excelled at swimming. He was active in the Special Olympics swimming team and raced competitively on the East Grand Rapids High School swimming team. Tanis is a student at the Noorthoek Academy at Grand Rapids, Community College.  The Academy provides a college experience, offering continuing education and inclusion opportunities in the arts and sciences for adults with intellectual disabilities. Tanis is an avid reader, swimmer, hiker, and skier. He is also a participant at Ready for Life, a life and work skills program.

Tanis has never let his blindness prevent him from moving up the fish ladder of life. He learns from every experience and uses each opportunity to set himself up for climbing to the next level. He also looks behind to pull others up along the way as he did in the blind and visually impaired program at East Grand Rapids Public Schools.

In 2018, Tanis, his family and the Wilcox family started the non-profit Beer City Dog Biscuits Company in Grand Rapids, Michigan. The mission of this company is to provide community and job training for individuals with all abilities. The “Brew Bakers”, a group of 200 individuals, are involved in every part of the business. The Brew Bakers participate in mixing, baking, packaging and marketing these “natural and delicious” dog treats.  Each treat is hand-made and packaged with care by the Brew Bakers, a team of disabled adults who are the core of the company culture and business process. 100% of the donations and sales of these products are reinvested into the company to support programs that enhance the personal and professional growth of the adults involved in the organization. 

If you visit the website: www.beercitydogbiscuits.org you will see the variety of dog biscuits that they prepare. It is enough to make a puppy drool, just looking at them!! They come in different flavors, such as blueberry and peanut butter. All the biscuits are made from nonalcoholic spent beer grains sourced from Founders Brewery in Grand Rapids, Michigan. The website will provide more information on how to order these delicious treats for your favorite canine. The treats can also be purchased at Pet Supplies Plus, Founders, Forest Hills Foods and many other retailers. By visiting the website, you can learn more about the business, its products and its mission and the role Tanis has had in making it a success, not only for himself but also for the many people he pulls along with him.

~ Patrick J. Droste, MS, MD

What to Expect When You Don’t Know What to Expect

Has anyone out there with children not heard of the book “What to Expect When You’re Expecting”?  Written by Heidi Murkoff during her first pregnancy in 1984, the original edition has been updated five times over the years.  Numerous spinoff works include titles such as “What to Expect When Your Wife is Expecting” and “What to Expect the First Year”.  The website www.whattoexpect.com proclaims to be the most trusted pregnancy and parenting “brand”. 

I never read “What to Expect When You’re Expecting”, or any other baby book, for that matter.  My approach to most things in life has always been to sort of wing it…and hope for the best.  Perhaps by the grace of a higher power, I’ve done pretty well so far - though there are days I wish a guidebook existed for those of us raising a child with a rare and unexpected diagnosis.  

I remember the shock and the crushing weight that came with our son Sean’s diagnosis of Norrie Disease when he was four months old.  I felt like my brain was melting down; I couldn’t comprehend any information we were receiving from specialists.  What in the world is Norrie Disease?  I’ve never heard of it.  How can our child have this unfamiliar condition that I’ve never heard of?  How did he end up with it?  And most importantly, how do we fix him?  The unexpected diagnosis of a severe visual impairment in your infant is beyond life-altering.  

We are now seven years into our journey and one of the most important lessons I’ve learned is that there is no easy “fix” for Norrie Disease, or any of these rare retinal diseases, but that’s okay – our children were not born broken.  There is no need to try to fix anything.  You quickly realize that different does not equate to less.  A child with a disability (or multiple disabilities) can be an amazing teacher for those who are willing to be receptive.  There is certainly no one-size-fits-all approach when it comes to offering advice to other families.  I’m sure there are many helpful books out there, written by parents or experts on disability.  I haven’t read any, though I would be curious to know if anyone is promoting the #1 “brand” on disability parenting….

In this house, we march on – learning as we go, trusting the guidance from many experts in our circle, and loving our child fiercely.  Below are just a handful of the lessons we have learned along the way that I offer as advice to someone new to the journey.    

Trust your instincts.  Always.  ALWAYS.  If you feel something is not right with your child, pursue your gut feeling until you have concrete answers.  You cannot afford to be meek and mild when your child’s health and well-being and educational success are at stake.  Don’t worry about offending doctors, experts, teachers, case workers or therapists.  Voice your concerns – whether related to a medical issue, a school issue, or anything else of significance - and don’t stand down until they are addressed.  Do not doubt yourself.  You are the premier expert on your child.       

Connect with other families.  This is so vital to do early on after your child has received a diagnosis.  Yes, you will be knee deep in grief, confusion, exhaustion.  But that is precisely why you need to reach out.  I felt like I was drowning.  I felt like my life had been stripped of all joy.  I know it sounds strange but that’s exactly what went through my mind – I just found out my infant son is blind, and I don’t think I’ll ever have anything to be happy or joyful about ever again for as long as I live.  What a ridiculous thought.  And it certainly did not come to fruition.  Sean brings us more joy in a single day than some people experience in a whole lifetime.  But the point is, your thoughts and emotions will take you on a wild roller coaster ride.  You need to connect with other families who know how you are feeling.  Your friends and family will be an invaluable support system, but other parents and families who are in your same orbit can really help you to process everything.  Search for support groups on Facebook, through local churches or hospitals, or do a Google search.  We are connected to Norrie families all over the world through a Facebook support group which has been an absolute lifesaver.  There are other parents out there who “get it”.  Don’t be shy with your questions, your frustrations, and your triumphs.       

Research, research, research.  I never really enjoyed researching for my college papers and assignments, but I research now like it’s my full-time job.  I’m currently researching things like local piano teachers who have experience teaching special needs students, best tasting liquid multivitamins for kids that can be snuck into apple juice (since Sean eats zero fruits, vegetables, or anything else with nutritional value), and what types of Medicaid waivers are implemented in different states in case we ever move from Virginia.  There are so many things to look into on top of actual treatments, surgical procedures, and therapies.  There are the medical issues and the non-medical issues – which are vast.  Research everything thoroughly so you can make informed decisions.  Ask for input from other parents.  Read as much information from medical studies as you can understand.  Browse through reviews of products before you buy them.  Search for online patient reviews of doctors and specialists.  Look up school ratings and reviews.  Google information on the IEP process so you know what to expect during meetings.  Most of this is common sense and you would be doing it anyway – whether you have a child with a disability or not, but I believe it takes on a level of heightened importance and the stakes are a little higher when you have a child with additional needs.        

Advocate, advocate, advocate.  See above paragraph.  Similar to researching, advocating for your child will become a (seemingly) full time job.  You will be your child’s voice, their cheerleader, and their champion until they are able to advocate for themselves.  Whether you are at a medical appointment or IEP meeting, applying for some type of assistance or support program, or out in a public setting, do not be shy about voicing concerns or requesting something that is in your child’s best interest.  Question professionals (who do not know your child like you do) if they suggest a course of action you don’t agree with.  And seek backup if you need it.  Hospitals and medical centers have patient advocates.  There are professional educational advocates that can review IEPs and attend meetings with you.  Use your resources and build your team.  Raising a child with a disability is not for the faint of heart – and often you will be learning as you go.  Effectively advocating is definitely more of an art than a science, but it’s one of the most important things you will do for your child.     

Go easy on yourself.  Don’t beat yourself up for dropping the ball from time to time.  For needing to escape every now and then.  For not knowing what you don’t know.  It’s hard enough to parent a child without a disability or any additional needs in the best of circumstances.  Parenting a child with a disability or rare disease can feel like a herculean task – because it is.  Keep an eye on your own physical and mental health and don’t neglect your medical care.  This journey is a long-distance trek, not a sprint.  Stress and exhaustion will wear you down.  Accept help when it’s offered.  Give yourself as much love and support as you are giving your child.  

Sit back and be amazed.  Your child is a gift.  All children are amazing and special in their own ways.  All children are unique.  We have three boys, and we adore each one for their individual personalities.  We certainly don’t have a favorite child.  But I will say, without reservation, Sean has opened our eyes, our hearts, and our minds to a whole new world.  We celebrate every little milestone mastered with him like we won the lottery.  His pure joy exhibited daily, his sense of humor, and his complex mind leave us in awe.  We love to watch how he experiences the world around him.  We don’t consider his visual impairment to be a showstopper.  Sean is a gift.  He is a teacher.  And your child will be, too.  Prepare to be amazed.    

~ Stephanie Brennell

Member, PRRF Family Advisory Committee

Proud Mom of Sean       

Seeing the Possibilities: Jennifer Z.

The Roman poet Horace once said, “Adversity has the effect of eliciting talents which in prosperous circumstances would have lain dormant.” Ever since I stumbled across this quote in my English class, I have contemplated its meaning and all the ways in which it relates to me.

Recognizing that everyone’s situation is different, I share with you how these words have inspired me with the hope that others may find some inspiration in them, too.

I am seventeen years old and a junior in high school. I focus much of my energy on school and my possible future career as a classical singer. I have a loving, tight-knit family, including a twin sister who is basically my other half. On most accounts, I could be considered a typical teenager, but that description omits what is perhaps my most defining characteristic.

I have about 20/300 vision after correction. Shortly after my birth, I was diagnosed with retinopathy of prematurity, or ROP, and suddenly the question of whether or not I would grow up with any vision wasn’t set in stone. I have heard stories of what it was like for my parents, traveling back and forth from New Orleans to Detroit with two small infants, one of whom was in and out of surgeries and examinations for the next few years. I can’t imagine the things they must have been feeling--was it fear? Desperation?  I’ll never truly know.

Yet sometimes I find myself wishing that I could travel back in time and meet my parents in 2004 or 2005, at that old apartment we used to stay at near the hospital in Royal Oak, if only to tell them that everything would turn out alright.

I know that I can’t do that. But I can reassure other parents in the world who have a young child diagnosed with a retinal disease that their child’s visual limitations don’t have to be life limitations. He or she can grow up to be valedictorian; to love singing, or dancing, or writing fantasy novels; and to contribute to the lives of others. There is only a small limit to what we, as children with disabilities, can do, as long as we don’t let our disabilities limit us.

My dad has always told me, “You can do anything you set your mind to.” When he says this to me, I have two responses: I either smile and nod graciously or I laugh and tell him that there are many things that I cannot do. I cannot, I might say jokingly, be a neurosurgeon–not with my limited vision. Or, more solemnly, I might say that I cannot drive a car. I am a realistic person, and I have come to accept these things as facts, even if the latter has been a particularly difficult concept for me to grasp as I watch my sister and friends earn their driver’s licenses. But the purpose behind my dad’s words is not to have me acknowledge what I cannot do. It is to encourage me to imagine what I can do, and to pursue that endeavor with all the drive and steadfast dedication I can muster.

Previously I mentioned that I am currently focused on one day having a career as a classical singer. In my dreams this might involve performing Puccini’s La bohème at the Metropolitan Opera. Realistically, however, it might involve earning a doctoral degree in vocal performance and teaching at a university. Either way, there is little in my life more important to me right now than improving my skills as a singer and performer.

If I stop to think about why I have gravitated toward singing in this way, I could try to convince myself that it is only because of my mom’s unwavering encouragement and support, because of my wonderful voice teachers, or because I greatly enjoy singing. All of these statements are admittedly true. But I believe that there has long been an underlying factor not tied to these other reasons, namely that I feel that my vision does not hinder my abilities to sing or perform in any way. Of course, I must read sheet music using the magnifying camera on my phone, and I have noticed after watching videos of my performances that the involuntary movement of my eyes--called nystagmus--can occasionally make it seem as though I am unfocused or distract from the emotional connection I am supposed to have with my audience. Still, these things are beyond my control, and, though it would be nice to imagine what life would be like without small problems such as these, I refuse to let myself dwell on them for too long. I refuse to let myself think that I cannot be a performer--because I can.

While we certainly cannot control the disabilities with which we are born, there is still something that we can control. It is something I have found to be immensely important in ensuring that my life is full and productive.

Adaptability.

Above all else, we can control how we adapt to certain situations, and, for children who are visually impaired, adaptability is key. We must take what we cannot do one way and ask ourselves, “In what other ways can I do this?”

I have lived my whole life asking myself this question. If, for example, I am starting the year at a new school and am worried about finding my way around on the first day, I take a tour before school starts and memorize the location of each of my classrooms. If I need to read the menu at a restaurant, I pull out my phone to use the camera--in the same way that I read sheet music. If I need to read the screen displaying flight times at an airport, I take a picture with my phone and zoom in on the photo, a practice which has helped me as I travel to and from Detroit for annual appointments. In this sense, I can control almost anything I do, without allowing my limited vision to prevent me from doing it.

In less than two years, I will be attending college, and I would be lying if I said I wasn’t nervous about living independently. In fact, that is what scares me the most, rather than the difficult college courses or having to make new friends. Still, for as much as I talk about adaptability, I would also be lying if I said I didn’t depend on other people for help. There is probably no other person that I rely on more than my twin sister. We can quite literally do everything together, and she is almost always there to help me in an uncomfortable situation. I know this won’t last forever, but I also know that depending on others, be they family, friends, or a random person waiting in line beside me, is perfectly acceptable--and advisable. After all, the ability to walk up to a stranger and ask for help reading the signs above the isles at a grocery store or the price tag on a pair of jeans is a form of adaptability. I am no less fulfilled as a person due to these interactions. To the contrary, they can be rewarding.

All in all, visually impaired children--and their families--should believe that there is always a way to succeed at the task at hand. It may seem as though the impossibly large obstacle that stands in the way of such success will never relent, but this does not have to be true, for this obstacle can be impossibly tiny, and, instead of promoting failure, fuel the greatest successes children can imagine. Such “adversity” should not be the weight that holds children down. Instead, it can help them grow and develop their talents—it can help them succeed in whatever ways they dream.

~ Jennifer Z.

Fish Ladder Story: Brandon Werner

When Brandon Werner was born on January 26, 1992, everyone commented on “his beautiful blue eyes”.  However, around 6 weeks of age, Brandon’s mother noticed jiggling of his eyes “in different directions”.  After seeing several eye doctors, a retinal specialist in their area identified retinal hemorrhages in each eye. He immediately referred Brandon to Dr. Michael Trese at William Beaumont Hospital in Royal Oak, Michigan. Dr. Trese felt that the bleeding was caused by a condition called Familial Exudative Vitreoretinopathy (FEVR). 

 FEVR is an inherited, progressive bleeding disorder of the retinal vessels characterized by abnormal growth of the blood vessels and ultimate retinal detachment.  Many cases of FEVR respond to medical and surgical treatment resulting in variable degrees of visual function. However, in Brandon’s case, despite multiple surgeries and pharmacologic treatments, he became totally blind/no light perception in each eye by eight years of age. 

Brandon’s mother, Alissa, made sure that he remained active in all areas. Brandon mastered Braille at a very young age, excelled in school, and became actively involved with sports for the visually impaired such as Beep Baseball, Goal Ball, and rock climbing.  His mother organized a Goal Ball team which attracted visually impaired players from all over Michigan. Brandon and his family participated in every Visually Impaired Sports and Activity Day (VISD) held in Grand Rapids, Michigan, during the first week of June from 2001-2019.  When in high school, Brandon traveled with the marching band to different venues including the state competition. 

After high school, Brandon attended and graduated from Albion College. During this time, he worked many part time jobs including training blind teens how to use a global positioning system (GPS) while working for Leader Dogs for the Blind in Rochester, Michigan.  He also worked as a clerical assistant for a Michigan Congressman and at the Defense Logistics Agency.  Brandon always had an interest in mathematics and computers.  He developed and instructed digital math programs to blind high school and college students. 

One of the most difficult challenges that Brandon, and other visually impaired college students, faced during their education was gaining access to materials and information sources.  

Brandon would ask other students that attended his classes, as well as his professors, to read things out loud and draw graphs so he could feel them.  Networking with professors in this way was important, “as it provided opportunity for jobs”.  This experience also helped Brandon understand the challenges of other visually impaired students following him.  He worked diligently to develop different digital systems to help students gain access to material. 

Despite his many skills and job experiences, Brandon was unable to secure employment after college, something that seems especially difficult for visually impaired college graduates trying to enter the work force.  He went back to school to earn a Master’s degree in Vision Rehabilitation Therapy at Western Michigan University.  While enrolled in the Master’s program, he continued his job search sending many applications and resumes. 

Brandon’s work did not go unnoticed. He was offered a position at the University of Michigan and is currently working as an Accessibility Analyst focused on making websites and software easier to use and accessible for everyone at the University. 

Brandon feels that the “mastery of technology is the key to a successful future”. The technology applies to teaching people how to perform a work assignment, travel from one place to another, or using the computer to develop free screen readers that have become available to lower barriers and provide access to work applications. Other tools like Voice Over on the I Phone make it possible to “perform tasks on the road, keeping a calendar, communicating electronically and accessing documents on the go”. 

Brandon has never let his visual impairment keep him from “moving up the fish ladder of life”.  He never stays at one level very long.  He is proud of his accomplishments but most importantly, he is always looking for young fish behind him to get to the next level, whether it is by direct personal assistance or advising on the development of a phone applications, to help them be successful in a sighted world. 

~ Patrick J. Droste MS, MD

Uncovering Creativity: Miles Scharfenberg

Miles Scharfenberg was born on May 18,1994 in Kalamazoo, Michigan. He was 15 weeks premature and spent his first three months of life in Neonatal Intensive Care Units in Kalamazoo and Royal Oak, Michigan.

Like many premature children, Miles had challenges from Retinopathy of Prematurity (ROP) and neurologic development. He underwent many vitreo-retinal procedures, on both eyes, by Dr. Michael Trese and his colleagues at William Beaumont Hospital. The most recent procedure was a difficult lens extraction in the left eye during the summer of 2018. Miles also endured challenges from spastic cerebral palsy, which has confined him to a wheel chair and severe delays in speech, hearing and cognition. Miles is non verbal because of his hearing impairment.

Through the years, the biggest challenge Miles’ eye doctors faced, was a constant struggle to keep his pupils from closing over due to chronic inflammation of the eyes. He underwent many operations to remove scar tissue from the pupils so that “The light could get in.”

Miles has viewed his world from two pupils about one millimeter in size. From an early age, he was always attracted to light and colors. He liked to “splash “colors on white paper and, as he grew, he started to place the colors on poster boards, sheets, walls, table cloths and whatever else he could find. Not being able to speak, he expressed himself with his colors and others noticed his expression and creativity.

Miles’s mother is an occupational therapist and she insisted that he get as much occupational and physical therapy as possible. Many of his therapists recognized Miles’ talent for putting colors together and as Miles grew, so did the complexity of his “splashing.”

Miles came under the tutelage of Mr. Ken Freed at the Kalamazoo Institute of Arts. Mr. Freed spent his life teaching students how to make art. Miles presented unprecedented challenges to Mr. Freed and his team of talented occupational therapy students and physical therapists. The team developed special painting innovations which they termed “adaptations”, such as a tennis ball attached to a stick that would allow Miles to paint designs on canvas. Some sticks were long which allowed him to reach high areas of the painting from his wheel chair. Other sticks were shorter for closer distances.

People began to appreciate Miles’ expressions of color on canvas. His largest painting is a 7ft. by 5ft painting entitled “Emotion“ that is currently displayed at the Public Media Network building in Kalamazoo, Michigan. He also has several smaller paintings displayed on the walls of Mary Free Bed Hospital in Grand Rapids, Michigan. Miles spent many of his early years in the Outpatient and Inpatient departments at Mary Free Bed Hospital. In 2013, at 18 years of age, one of Miles paintings was featured on the cover of the Open Journal of Occupational Therapy; a follow up painting was published in the same online Journal in the fall of 2019. In 2018, Miles received recognition for his entry in to the Grand Rapids Art Prize Exhibition.

Showcased in this article are just a few of the painting by Miles. One is entitled: “There is a Crack in Everything: That is How the Light Gets In.” These words are part of Leonard Cohen’s song “Anthem.” Carole Scharfenberg , Miles’ mother, felt that this title most closely conveyed Miles message in the painting. “I felt that the painting looked like Miles retina that had a little window of light coming through”, Carole said. From an eye doctor’s point of view, the bright “splash” in the center of the painting, represented Miles’ one millimeter pupil, in his left eye, that allowed light to get into his world. A very gifted occupational therapy student, Laura Weincek, helped Miles make this painting in 2018.

Miles has been swimming up the Fish Ladder of Life since the very beginning. He continues to rise up the ladder to higher waters; Miles is still on his journey and he is lending his gifts of expression for all of us to enjoy and look at in amazing wonder! Every time one looks at one of his paintings, the individual leaves with a different interpretation, not only of what message the painter is trying to convey, but also what we, as observers, interpret in his creativity.

To learn more about the incredible journey of Miles Scharfenberg, his adaptive equipment and how he works with his “innovators”, we encourage you to look at his biopic on YouTube “Uncovering Creativity: Miles Scharfenberg.” You can also communicate electronically at scharfenberg.art@gmail.com.

~ Patrick J. Droste MS, MD

The Fish Ladder of Life for the Visually Challenged Individual

Fall is the time of year when shorter days, cooler nights, and lower water temperatures are accompanied by the annual migration of lake trout, salmon, and other species to return to their streams and estuaries of origin to spawn and complete the circle of life.  The fish begin their return and encounter many obstacles on their way home, such as predator fish or birds, hydroelectric plants, locks, dams, and fishermen.  In order for the species to survive, government organizations like the Army Corps of Engineers, Department of Natural Resources (DNR) as well as state and private corporations, have worked together to develop ways that allow the fish to overcome these barriers and flourish. These structures take many different forms and are sometimes referred to as a fish way, fish pass, fish steps, or fish ladder.  Most fish ways enable fish to pass around the barrier by swimming and leaping up a series of relatively low steps (hence the term ladder) into the waters on the other side to reach their final destination.  Since fish may need to climb many ladders, these fish ways are constructed with circulatory pools that allow for rest before continuing.

There are certain parallels between fish ladders and human development. Both have a beginning and an end and, in order to be successful, both fish and human need to overcome obstacles placed in their paths.  Their final fate depends on a strong nurturing support system, persistence, durability, and a little bit of good fortune.

This brings us to Michael and Elizabeth.  Michael Ryan Kazmierski Dunn and his twin sibling Elizabeth Madeline Kazmierski Dunn were born extremely premature at Helen DeVos Children’s Hospital (HDVCH) on March 28, 1996. Both children faced many challenges in the neonatal intensive care unit (NICU), including advanced Retinopathy of Prematurity.  Despite laser treatment at 3 months of age, their disease progressed at a very aggressive rate and multiple surgeries were performed on each child during the first fifteen years of their lives.  Despite best efforts, both have only light perception vision with no ability to read the printed word.  The lack of vision was the largest fish ladder that both had to negotiate in their early years, but, like the fish trying to make their way home, both children had a fierce determination to excel and external support.  In this case, it was from their family and friends.   

Michael and Elizabeth attended summer camps for visually impaired children under the financial support of the State of Michigan, the Michigan School for the Blind, and private donations. Both children and others at the camp (affectionately referred to as Camp “T”) learned skills for basic self – care as well as creative studies, such as music and singing.  At camp and home, both mastered the piano, sang duets, and performed at local restaurants.  Michael also developed a love for the Uilleann Pipes (Irish Bagpipes).  Unable to use traditional pipes because of his glaucoma, Michael developed his skill with an electronic version.

Nothing has stopped these two. They have participated in every Visually Impaired Sports and Activities Day (VISD) since its inception 20 years ago, playing for the group at lunch time starting at an early age.  I can still remember Michael’s mother holding an umbrella over his head as he played an Irish hornpipe outdoor in the pouring rain!  More recently, the VI Sports Day has included a talent show and Michael and Elizabeth are the mainstay of the event.  They are not only appreciated for their talents but also for their abilities to get other children up on stage - singing a song, reciting a poem, or playing an instrument.  It has become one of the most popular activities of the Day.

For our first car show fundraiser, CARS FOR A CAUSE, for the PRRF featured visually impaired children/young adult entertainers and entrepreneurs. Michael and Elizabeth practiced for the event with several other visually impaired performers and their entertainment was one of the most well received venues of the day.  After graduation from high school, these two musically gifted individuals put on a concert at the St. Cecilia Society in Grand Rapids, playing pieces from Bach and Beethoven as well as more popular selections from Mumford and Sons, a British folk rock band, and Uilleann pipe music. Michael and Elizabeth have made a much cherished CD called “Twin Thistle”.

Behind this duo was the never ending commitment from their parents.  Michael Kazmierski Sr., Michael and Elizabeth’s father, is their road agent.  He brings all of the electronic equipment, props, and portable pianos to every function.  He helped us write the grant from HDVCH to fund the VISD.  Marianne Dunn, Michael and Elizabeth’s mother, attends every function and has been very proactive in their education as well as the development of job opportunities for visually challenged individuals.

The greatest amount of credit goes to Michael and Elizabeth themselves, who have always supported each other and worked hard to be the best they can be in everything they do. With the help of their parents and others, they have developed the formula to success: commitment to an ideal, desire to do their best, and uncompromising integrity. Both have graduated from college and are making plans for the next step of their journeys. In a sense, they are like the fish waiting in the whirlpool, getting ready to move on to the next destination in their journey. 

~ Patrick J. Droste, MS, MD

Meet Jules

The first thing Jules told me was that she had joined a ski club and that she also plays unified soccer and basketball for fun. Jules, who has been blind since the age of 3 due to retinopathy of prematurity, said that she needs people on either side of her to guide her when she skies but basically, she does lots of the actual maneuvering herself.

Jules explained that she has a prosthetic eye now after one eye caused her great pain and needed to be replaced. She uses a cane and also has a full-time aid who reads braille to help in her middle school. She said that a big challenge is memorizing the routes inside her school, especially since next year she will be going to high school, which is even larger and more complicated.

In classes Jules has a variety of tools to help her, including braille math books, calculators, and braille screen tablets. She loves to read with her fingers and would like to be a writer someday.

Jules is a delightful young woman and an inspiration to all who live with vision problems. Despite being visually impaired, she continues to move on with her life, learning in every possible way with appreciation for the aids that help her navigate the world.

Jules sees Dr. Capone and Dr. Droste once a year each to make sure all is going well and is glad of their care. It is through this foundation that future innovations will be made for children and adults with her disease.

~ Kay White

Ben Conti

Ben is a senior at Cranbrook School and busy with all the activities that the last year of school includes, especially tennis and hockey.

But Ben has had vision problems all of his life, including multiple eye surgeries and patching for stabilization. Now he wears both contact lens and glasses all day, every day, and is comfortable doing everything using these tools to help him see well.

Ben was aware that his family was able to afford the treatments for his sight and wanted to help other children with the expenses of vision problems. He organized three tennis tournaments as fundraisers for VRRF. The biggest challenge was figuring out how to organize the tournaments, but once he decided that they should be fun and inclusive, the rest fell into place. About 80 kids participated and these three tournaments raised $18,000.

Ben has plans to major in business, international relations, or chemistry when he goes to college next year, but in the meantime, he has majored in heart. His empathy for other children with vision problems meant that many others benefitted from his drive and caring.

Thanks, Ben!

~ Kay White

Photograph courtesy of Ben

A Young Philanthropist - Rebecca S.

Rebecca S. turned 12 this past June and began to prepare for her Bat Mitzvah. In keeping with her family’s philanthropic values, she decided to use the Bat Mitzvah as a platform to raise awareness as well as money for a cause dear to her family - research to help children who have been born without sight.

Rebecca’s cousin, Isaac, was born blind just over two years ago. His vision impairment is a result of a form of FEVR, and he has been treated by Dr Capone since he was a tiny baby. Rebecca is very close to her cousin and began to think of how she could help others see Isaac’s journey and become more understanding of the challenges that anyone with vision impairment faces.

In preparation for the Bat Mitzvah, Rebecca and her family set up a Go Fund Me page for VRRF, which raised almost $10,000. At the actual Bat Mitzvah service, Rebecca wanted the 200 attendees to also physically understand how it is to be blind. During Rebecca’s speech, the guests all put on blindfolds and listened while Rebecca talked about her special bond with Isaac as well as the challenges that he and other children who cannot see face. She spoke of the hope that the research being done now holds for preventing or improving children’s vision problems in the future.

At the party which followed, the entire hall was set up with black lights which showed what it is like to move in the world of darkness. Rebecca designed a logo of an eye to focus all on vision and how important it is. Everyone had fun but many were deeply touched by the new personal knowledge of how the world without sight is challenging.

Rebecca is a wonderful example of how a caring group can make an impact. The financial donations and the awareness which were raised are very meaningful contributions to the work of the Pediatric Retinal Foundation.

Thank you, Rebecca, and many thanks to her family and friends.

~ Kay White
~ Photograph courtesy of Rebecca

Calvin V.

Calvin V. is an outgoing, cheerful, and forward-thinking 10th grader, making use of his talents with limited sight. Calvin was born with Congenital X-Linked Retinoschisis. He explained that he looks “normal”. No one would guess that he cannot read fine print and is legally blind in both eyes. He has gone through multiple surgeries to maintain his vision in his left eye, (he was born with a macular scar in the right), and productively utilizes all the resources at his school to continue his education.

His mother, Lilia, explained that early intervention made such a difference. They were recommended to Dr. Drenser, who has been taking care of Calvin’s eyesight. Lilia also said that support systems are critical and sometimes a parent has to search carefully to find the resources and accommodations a child needs. Calvin has an excellent teacher consultant for the visually impaired who has read tests to him, arranged for a talking iPad, and helped make schoolwork more manageable. Lilia said that the state of Michigan has some of the best programs in the country for the visually impaired.

When asked about all his operations, Calvin said, “I had to do the surgeries” to maintain his vision so he did not worry about them. At this moment, his vision is stable and he about to get his driver’s license.
Calvin feels that his impairment has given him the strength of adaptability. He explained that he often cannot do things in the “normal” way that a sighted person would, and he enjoys the challenge of accomplishing what he wants to through his own ideas. He thinks it is “cool” and “fun” to look ahead to new ways of managing his life. Calvin is very open about his disability and willing to share his story. He would like others with disabilities to not think they will not succeed because of their situations but to have a belief that they will prevail.

~ Kay White

~ Photograph provided by Lilia Ventresca

Aria’s Journey

Aria’s journey began in October 2014, at just two months old.  Her parents noticed she was often having rapid eye movements and urged their pediatrician to send the family to a pediatric ophthalmologist.  The ophthalmologist contacted Associated Retinal Consultants immediately upon their first visit, and Aria was seen the very next day.  A week later, after her first exam under anesthesia, Aria was given the diagnosis of familial exudative vitreoretinopathy (FEVR). The news was devastating to the new parents who had never heard of the disease nor were they aware of anyone in their families with eye related issues.

Since then, Aria has had several procedures which include the placement of a scleral buckle on her left eye for partial retinal detachment, laser treatment and several exams under anesthesia. In February of 2016, Aria experienced a bout of glaucoma, which resulted in an ER visit and ultimately, the depletion of the vision in her left eye.

Aria is now 4 years old and is a ray of sunshine to everyone she meets.  She is an outgoing, kind, loving little girl who loves to make people laugh.  She enjoys going to school, dance class and playing with other kids.  

During the families first meeting with Dr. Anthony Capone, he told them that this was not a one-time visit, but would be a journey. The family is grateful for the doctors and staff of Associated Retinal Consultants, who have been with them every step of the way.

“We feel very blessed to have such a wonderful group of doctors so close to our home.  Their care and concern for our daughter is obvious, and the research they are doing is of the utmost importance.  We are excited about the work of the PRRF and have high hopes for the success for the first Hope for Vision Walk.  It is our personal goal to support the organization in any way we can with their quest for a cure of pediatric retinal diseases”.

                                    ---- Pasquale & Lisa LoVasco

Focus on Advocacy: Karen Hoogland

The Halberts

Meet Board member Charles “Chuck” Walls

Meet Nate, A Budding Musician

Nate, an active seven-year-old, lives with his mom, dad, and two older brothers. A first grader, Nate is bright, opinionated but with an enthusiasm to learn and experience anything that comes his way. He also has Norrie Disease and is blind.

Diagnosed when he was a newborn, Nate was referred by his ophthalmologist to Dr. Antonio Capone, Jr. who he visited when he was three months old. At that time, he had surgery to remove the lenses from his eyes and the blood from behind his retinas, in the hope that they would reattach. Since his initial surgery, they have visited with Dr. Capone once a year. When asked, Nate may not be willing to say he has a favorite subject, but he does enjoy that and approaches his classroom with a quick intelligence and exceptional memory.  He has an aide in the classroom. He reads at grade level and is proficient in Braille.

Nate loves music. he began to take piano lessons when he was 5 years old. He studies the solfége method of musical training period with a great 'ear' for music, he has no problem reproducing the sounds that his teacher plays for him and was able to reproduce on the piano the classic 'Lightly Row' after he heard it at a concert.  A greater challenge is using the proper fingering to play the piano, but he has been practicing and is able to apply that skill when he is learning Braille.

Nate has many pictures and approaches them with the same skill and sense of humor.  He loves to play Bop It! Simon, an electric toy that is great for visually impaired children. He has taken up karate with his brothers and is enjoying the experience. A trampoline and an exercise ball challenge his balance and since a body in space.  Life will have many challenges for Nate, but with his cheerful attitude and desire to enjoy what he encounters, he will, no doubt, succeed.

A Letter From Bev Hughes

My husband Rob and I were absolutely thrilled to welcome our third baby girl Rachael into our family. When she was 5 weeks old, we noticed she didn't respond like her older sisters, Sophie, 5 and Isla, 3, when they were the same age. At 12 weeks old we took her to an ophthalmologist where we were told she was legally blind. Our world came crashing down.  She was diagnosed with Familial Exudative Vitreoretinopathy (FEVR).

My sister Kay, who is an optometrist, and I immediately began researching FEVR. We noticed many of the FEVR articles we came across were written by Dr. Trese. Rachael had excellent care by her retinal surgeon in Sydney, who also highly recommended Dr. Trese having worked with him in the past. Rob and I knew we had to take Rachael to see him.

In July 2015, Kay, Rachael (now 5 months old) and I went to Royal Oak, Michigan, while Rob stayed in Sydney to look after Sophie and Isla. Dr. Trese examined Rachael under a general anesthetic and confirmed the diagnosis and treatment plan of our doctors in Sydney.  I came home inspired and determined to give Rachael every opportunity in life that her older sisters have and encourage her to do all the things she wants to do, just like we do with Sophie and Isla. 

In July 2015, Kay, Rachael (now 5 months old) and I went to Royal Oak, Michigan, while Rob stayed in Sydney to look after Sophie and Isla. Dr. Trese examined Rachael under a general anesthetic and confirmed the diagnosis and treatment plan of our doctors in Sydney.  I came home inspired and determined to give Rachael every opportunity in life that her older sisters have and encourage her to do all the things she wants to do, just like we do with Sophie and Isla. 

Rachael's left eye has a retinal fold across the macula. Her right eye has dragging and pulling of the retina. She uses this eye most of the time for her vision. Rachael is on target in meeting her milestones. Her eyes are stable today and her functional vision is better than what we were first told when she was diagnosed. She has come so far and has really surprised us. Rachael just celebrated her first birthday. Her favorite things to do are the moment are play peekaboo, laugh and play with her sisters who adore her, drop food on the floor, play with balls, water play and climb upstairs. I can't believe how the year has flown. Whilst it wasn't quite the year we had expected, Rob and I feel so blessed to her in our family. She has been such a joy and delight to us and we are loving watching her grow and explore.

Letter From The Abbruzzese Family

My family and I held our annual “Eye on the Future” soup cook-off and basket raffle on November 21, 2015.  This year, we had new t-shirts printed and also added a bracelet hand-stamped by a local jewelry maker. The bracelet has a “shine” disc, a little star charm, and disc which is hand-stamped “love” in Braille. They sell for $20 and $8 of that goes to the fundraiser. We will continue to sell them throughout the year. Our daughter, Julianna, also makes Braille art which she sold at the event. 

The fundraiser was a great success and we are proud to have raised $5,840 for research.  Please find the checks enclosed totaling this amount. Both of our daughters have been diagnosed with FEVR. Therefore, you can understand why this foundation is dear to our hearts. We appreciated all of your hard work and are hopeful for a cure in the future.