Our journey started on May 24th 2011 when our first child Liam Robert Atkinson was born, a healthy beautiful baby boy. We had expected there to be possible complications since we had been induced early due to several health problems on my (mom’s) behalf but instead we received a perfectly health baby boy. He was everything we had been praying and waiting for (sometimes patiently, sometimes not so patiently) for over a year. The first few weeks of no sleep whatsoever didn’t even faze us we were so overjoyed. Then our happy ever after journey was halted when we started to notice (along with everyone else) that our sweet baby boy’s eyes would not stop shaking. We were quickly diagnosed with Nystagmus and eventually that diagnosis turned into Ocular Albinism with Nystagmus, and then finally to a final diagnosis of Oculocutaneous Albinism (full blown albinism) with Nystagmus, leaving Liam worse than legally blind and crushing our thoughts of a perfectly healthy newborn. BUT, soon with tons of family and friends to support us and a wide range of doctors and therapists to help us, we found our foothold as parents of a visually impaired child. It has been an incredibly long journey, one that we would do over again a thousand times over because our little boy is still that, our little boy. We still have a long journey ahead filled with doctor visit after doctor visit, and specialist after specialist but we hope by sharing some of it as we go with others that we will educate others, help parents in similar situations, and maybe touch lives along the way and make new friends too. Having a disability does not have to slow you or your child down and educating yourself about their condition however you can is key. I have found along our journey some of the most helpful information came from blogs like ours of parents like us to children like Liam and that I learned the most from their experiences and advice. We only hope if nothing else we can provide that for someone else while keeping our family and friends informed and raising awareness for childhood blindness.
To read our more detailed story of how we found out Liam’s diagnosis, what it means for him and us, treatment and therapy, or to read about our journey since then, start with our post “Liam’s Story” and go from there.
Thanks and God Bless,
Brian and Amy Atkinson