“Despite all of his challenges, Ethan is such a happy kid and works so hard at everything he does. His laugh is contagious, and ever since he was little, people would comment on how happy his laugh made them.”
A message from Ethan’s family:
Ethan is an incredible 7-year-old boy who was diagnosed with KIF1A Associated Neurological Disorder (KAND) in April 2021. As we began to do research about the disease, the uncertainty of his future was devastating. After many tears shed, we began to realize that all we have is today. The future is unknown for all of us, so we need to live each day in the moment and cherish every second with our loved ones. Our goal is to give Ethan, along with our other children, the best life they could possibly have and make sure they know they can accomplish anything they set their minds to.
Because of KAND, Ethan has been diagnosed with Autism, ADHD, and Epilepsy. He spends hours every week in therapy, and we are so grateful we have such an amazing team to help Ethan succeed. Epilepsy is actually the diagnosis that led us to get genetic testing done which led to finding out about his KIF1A variant. Ethan went 133 days seizure free, but sadly last week he had a small breakthrough seizure. It breaks our heart every time he has to experience a seizure. We would give anything to make sure he never has another seizure.
Despite all of his challenges, Ethan is such a happy kid and works so hard at everything he does. His laugh is contagious, and ever since he was little, people would comment on how happy his laugh made them. He has always found a way to find joy in the simplest of things. He loves playing with cars, spending time with friends and family, riding roller coasters, and swimming.
Since his diagnoses we have gotten so much support from friends and family. Ethan has always loved the Hulk and we decided that Incredible Ethan would be our catch phrase as we go through this journey. We have plans to do a fundraiser in May 2022 and look forward to raising funds and awareness as we seek to find a cure for this devastating disease. We are so thankful for the KIF1A family network and the love and support we have gotten since day one- we are definitely all in this together.
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KIF1A.ORG is dedicated to accelerating research to find a cure for superheroes like Ethan. 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.