Rohan is 5 years old and lives in the Washington, DC area. His mom says “He brightens everyone’s day and all we want is a brighter future for him because he so deserves that. He makes our hearts burst with joy and he truly is a superhero.”
A Message from Rohan’s Family:
Rohan was born in April of 2015. For the first year of his life, it was hard to see anything past his bright eyes and constant smile. Unfortunately, it became apparent as time went on that something was wrong as we noticed what he was and wasn’t doing compared to other babies his own age. But, it wasn’t till Rohan was one that a doctor noticed something off about the way he was able to look at things and simultaneously that he wasn’t able to walk independently.
This launched us into a very difficult year of meeting specialists, getting tons of tests, MRIs, blood work and finally getting genetic testing. Even though we knew it was likely they would find something, it was still surreal and heartbreaking to get the test results back that revealed his KIF1A diagnosis. It was overwhelming to confirm the challenges that would lie ahead for him and the reality that there were many things that he likely wouldn’t be able to do.
But, as Rohan has grown up, he has shown how relentless, determined and capable he is. Despite all of Rohan’s challenges with walking, visual processing and overall developmental delays, he never gives up and keeps trying no matter what he’s doing. He various therapies have become a constant in our lives and he works hard every day to meet his goals. He surprises us every day with what he’s learning. And beyond that, he is a joy. He lights up every room he walks into and touches everyone he meets.
We don’t know what the future holds, and all we want is for Rohan to keep being able to do the things he loves. He brightens everyone’s day and all we want is a brighter future for him because he so deserves that. He makes our hearts burst with joy and he truly is a superhero.
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KIF1A.ORG is dedicated to accelerating research to find a cure for superheroes like Rohan. You can help. Treatment is within reach, but there are two obstacles in our way: time and money. Give today to empower KIF1A families to achieve our mission for this generation of KIF1A superheroes.