“We know that every single day counts and the sooner we find a treatment, the better it will be for Alyssa and all who are affected by KIF1A.”
A Message from Alyssa’s Family:
Alyssa was the perfect baby and her first year of life was just as normal as it could be. She was slightly behind on sitting up and crawling but nothing concerning. After she celebrated her birthday, we started looking toward that next milestone of walking, but it eluded her. She got to 15 months and then 18 months but still no progress towards walking. We had seen the pediatrician several times and I had mentioned my concern about her not walking but they still were not worried. We finally did get one of the doctors to see that she wasn’t making progress and she referred us to a specialist. That began our journey to our KIF1A diagnosis.
Through many doctors and therapists and tests and procedures and diagnoses, it took us 16 years to be able to identify this little gene that was causing so many big problems for our sweet girl. Alyssa struggles daily because of the effects of KIF1A… atrophy of the cerebellum, scoliosis, optic nerve atrophy, developmental delays, peripheral neuropathy, and epilepsy. She has difficulty in school, needs assistance with mobility (uses AFOs, a crutch, walker, or wheelchair) and needs help with daily living activities. Despite all of that, she continues to persevere. She enjoys playing challenger league basketball, baseball, and bowling, singing in the choir, shopping, blowing bubbles, riding her bike, talking on the phone with her friends and playing with her sister.
We are very grateful that there are some very talented researchers and scientists who are working hard to find a treatment or cure for KIF1A and thankful to all of those supporting this research. We are hopeful that there will soon be a way to halt the progression of this disease so that Alyssa is able to continue living and enjoying her life without further decline. We know that every single day counts and the sooner we find a treatment, the better it will be for Alyssa and all who are affected by KIF1A.
GIVE A GIFT
KIF1A.ORG is dedicated to accelerating research to find a cure for superheroes like Alyssa. 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.