“Rylie is independent, stubborn, silly, and of course the happiest! She loves making everyone around her smile, and feel loved. Her laugh is contagious, and she loves to share it with everyone.”
A Message from Rylie’s Family:
During Rylie’s first several months of her life, we noticed her reaching milestones late. The doctors weren’t too concerned until she reached about one year old and was just starting to sit up by herself. She started physical and occupational therapy around the age of one, and she was misdiagnosed with cerebral palsy.
Rylie has been delayed in every aspect, but it has never stopped her contagious smile! After many appointments, and several tests and blood work, we got her diagnosis of KIF1A around the age of 4. Rylie is now 7 and in kindergarten, but she is not able to participate in the average school work, so she has a personal aide and works a lot with one on one.
Rylie is independent, stubborn, silly, and of course the happiest! She loves making everyone around her smile, and feel loved. Her laugh is contagious, and she loves to share it with everyone. She may not have good coordination or balance and has a whole lot of spasticity, but she loves to RUN in her walker. She doesn’t let anything stop her and we are so thankful for that.
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KIF1A.ORG is dedicated to accelerating research to find a cure for superheroes like Rylie. 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.