“She will allow no obstacle to stop her from accomplishing her goals and we are proud of her every day.”
A message from Addison’s family:
Addison was born in September of 2017. She was a small baby but ever so sweet. The first few months seemed normal, lots of eating and sleeping as babies do. She started crying a lot and had severe gastrointestinal issues at just over 2 months. This led to concern from our family doctor. She ran the first of what seemed like endless testing and did several referrals, which led to our diagnosis in October 2021 of a KIF1A genetic mutation.
As a result of her mutation, Addison has tremors, ataxia, hypotonia (she cannot walk or stand independently), bilateral optic nerve atrophy and absence seizures. It’s been a struggle for her to learn basic skills and she struggles with speech. Despite her physical challenges, Addison is determined, loveable, has an infectious giggle and a smile that lights up the room. Her speech and mobility are improving slowly. She loves climbing and playing with others. She will allow no obstacle to stop her from accomplishing her goals and we are proud of her every day.
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KIF1A.ORG is dedicated to accelerating research to find a cure for superheroes like Addison. 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.