The Halbert's Story

After having a healthy pregnancy and delivery, our world was turned upside down when our daughter, Presley, was diagnosed with Stage 5B FEVR (bilateral retinal detachment) a few days after she was born and was completely blind. 

During her first week of life, we saw multiple doctors in Texas who either did not feel comfortable operating on her given her age or did not feel surgery was even an option due to the severity of the presentation in her eyes. We were told her eyes would not grow so they would always be small and because she was already the most severe stage, nothing in her eyes would change. Heartbroken and searching for any sliver of hope, it became clear to us that we needed to travel to Detroit to see one of the “FEVR experts,” Dr. Trese or Dr. Capone.

After our initial visit with Dr. Capone a few weeks later, we knew we were right where we needed to be. He has been a godsend to us both medically and emotionally and was the first person who gave us hope. He has taken the time to thoroughly educate us on this rare disease and allow us to ask as many questions as we need.

We made three trips to Detroit before Presley turned one for three rounds of surgeries on each eye. While we initially were told her eyes would not grow, when we went to see Dr. Capone, her eyes had gone from being small for her age to being huge due to fluid buildup in her eyes. He saved her from getting Glaucoma by relieving pressure and protecting her optic nerves.  Dr. Capone had to remove both lenses and more and more of her iris with each surgery. When he went in for the second surgery on the first eye, he thought we had won the battle but lost the war. Her retina was sinking back slowly like we had hoped but there was no blood flow to the retina, meaning the retina was underdeveloped. Instead of stopping there, Dr. Capone kept going. After removing more and more scar tissue and draining dried blood, blood vessels finally appeared. Dr. Capone does not give up until it is not safe to continue and always has the child’s best interest in mind. His commitment and passion to help these kids, who often times do not have a positive prognosis, is something that truly leaves me speechless. 

Managing your expectations makes the smallest things feel like the biggest victories. Finding a doctor like Dr. Capone was a victory. Draining the fluid before she got Glaucoma and her optic nerve was damaged was another victory. Regardless of any light or vision we may or may not get, we are at peace with that.

Now two years old, Presley is a sweet, happy, and very chatty toddler. Her auditory processing and auditory memory is incredible. She has been learning how to walk with a cane and will soon begin learning Braille. She amazes us every day with how easily she picks things up and adapts. While we would give anything for Presley to be able to see, she has given us a new perspective on life and changed our world for the better. We are so thankful for Dr. Capone and the work that PRRF is doing to help families like us.

~ The Halberts