Hello Runners and Patient Partners,
My name is Nancy Coyne and my son is Garrett Coyne, age 4. Garrett is paired with Zeb Jones who is running the Boston Marathon! So who do I talk about first, Garrett or Zeb?!
Well Garrett, he is a wonderful, happy, curious, most lovable little boy with a terrible, rare, fatal, genetic disease, NCL or Batten Disease – infantile. It still makes me cry every time I type that. He is my first child and what a joy! Beautiful pregnancy, rough delivery, challenging infancy then just pure happiness. He was developing normally expect for a small speech delay and never slept through the night. He was growing and meeting all milestones until around age 3 and a half when we thought he needed glasses. He would hold books, trains, computers close to his face. We were reassured he was being a kid and “his eyes were fine”. Progressively his vision got worse and he was no longer picking airplanes out of the sky and he was walking into walls at night. We went to the eye doctor again, then the opthamologist and then to the special genetic eye doctor at Will’s Eye in Philadelphia. My husband and I were thinking the worse… our son will be blind. Little did we know that would have been the best case scenario. Garrett went through an MRI, ERG and genetic bloodwork. Weeks went by and we finally got our answer… Neuronal Ceroid Lipofuscinosis – infantile (Batten Disease), say what?!
It is a rare, fatal, genetic disorder. My beautiful, loving, happy little boy will continue to lose his vision, he will have seizure activity, his motor skills will disappear and his entire body, mentally, physically will deteriorate until his is bed bound and taken from us far too soon. Everything is so variable and unpredictable but the ending is always the same. There is no treatment or no cure.
But there is hope…. YOU! Thank you to our awesome runner Zeb and everyone involved in the running for rare disease community. We hope to raise awareness and encourage researchers to find interest and search for a cure or even just a treatment to help. Getting back to Zeb… he is a great, ambitious guy who gives us hope to know that there are people and strangers out there that care and can easily become friends.
See you in Boston,
the Coyne Family, Nancy, Joe, Garrett and Palmer
p.s. If you are interested in Garrett and his journey go to www.battenfighter.com or look us up on Facebook, Garrett the Grand – Batten Fighter (we started a non-profit).