This is our bright, bubbly, energetic, funny, joyful, and handsome son, Mason. When he was four weeks old, we started to recognize something seemed a bit off. He was not meeting developmental bench marks appropriate for his age and did not respond to us the way one would think a new baby would respond to their parents. After undergoing hearing and vision tests at The Children’s Hospital Colorado, we were able to rule out hearing loss, but not vision.
Mason’s ophthalmologist was confident he had a disease called Persistent Fetal Vasculature. She discussed the need for contact lens, glasses, and patch therapy after surgery. She also mentioned that he may need multiple eye surgeries. She continued to inform us that there would be limitations on the things he would be able to do and participate in growing up. For example “sports could be a challenge,” “he can never be a pilot,” “he can never be a surgeon.” Immediately, our world came crashing down on us. One minute, I was holding my sweet baby boy, thinking he had the world at his fingertips, his father and I would do everything we could to support his dreams and aspirations to become whomever he wanted. Frankly, we were still trying to figure out the whole breastfeeding thing and then “BAM,” life as we knew it and dreamed it would be over! I cried and was sick to my stomach for months.
After our initial appointment, we received a call that surgery had been scheduled for December 14, barely a week before our first Christmas with our new baby. It was to be a co-surgery with one of two Retina Specialists who work with children in the state of Colorado. Upon Dr. Mathias’s review of the ophthalmologists’ notes and photographs of Mason’s eye, it was decided the required procedure was much too complex and it would be better for the Retina Specialist to perform the procedure alone. In other words, the damage to Mason’s eye was far worse than originally thought.
On December 14, 2018, when Mason was just four months old, he underwent his first of many surgeries. While Dr. Mathias was operating, he discovered Mason had a completely different disease than the original diagnosis. My husband and I underwent genetic testing and eye exams with Dr. Mathias to help make the determination of the exact disease. At four months old, our sweet baby was diagnosed with Coats’ Disease. Thus began our journey of research, discovery, collaboration, and the fight to help our son.
The most terrifying part of all of this was the sense of isolation we felt. There is very little information about the disease available online, very few doctors in our region have knowledge, and there is only ONE non-profit that exists to help raise money and awareness for Coats’ Disease. I turned to Facebook to find a community of roughly 600 people to turn to for support. Six hundred, is that it? I thought to myself, this has to change!
Mason is now 16 months old and just had his 7th surgery. He has had surgery almost every month since he was four months old. He is currently at stage 3A and his doctor is doing everything he possibly can to keep the disease from progressing further. Mason works with a Physical Therapist, Occupational Therapist, and Vision Teacher once a week to help with his fine motor skills and getting him caught up to his peers. If you were to meet Mason, you would never know he is blind in one eye. He does not let his limitations slow him down. He enjoys music, figuring out how things work, climbing, swimming, his dogs, and reading. Mason is the toughest, bravest, strongest, most positive person we know. He is a true inspiration to us and we wake up every day with the goal to be better parents than we were the day before. We are in this fight together with you, our family, and friends. Together we will find a cure.