My name is Jax Koch and I have a special needs brother with Sanfilippo Syndrome. His name is Alex. We live outside of Nashville, Tennessee. He was diagnosed when he was 10 years old in 2013. He just turned 15 this March. He is my only sibling. He is a great inspiration for anyone going through tough times.
What I love about Alex the most is his smile. Also, I love that he has my same interests, like basketball. We watch basketball and we play it together outside. He is fun to hang out with most days. Some days he is either very sleepy or very loud.
The challenges of having a brother with this disease are frustrating. He can’t speak to us so it is very difficult to understand what he wants or needs or if he does not feel well. He also has trouble sleeping so it is a struggle to go through the day normally with him because he is always tired, but he always has a smile on his face. It is also a struggle to not have my older brother to ask for advice on school, sports or friendships. It is hard not knowing what he would be when he grows older or what type of kid he would be without the disease.
To summarize it all up, this disease SUCKS! It is hard sometimes but you gotta push through it like it’s not even there. This disease that I’ve seen my brother fight with for the 12 years that I have been alive has made me appreciate so much more about life. Even the little things like asking for ice cream or saying I LOVE YOU.
This blog is by Chloey Rudy, an 8th grader that I met while competing at the Florida Future Problem Solving competition in March. While many people were interested in hearing about my project, Chloey had a special connection. After telling her about the website, she shared her experiences as a… Read More
Yesterday, the Cure Sanfilippo Foundation launched an awareness campaign about my dog, Henry, and his relationship with Blair. My sister, Blair, and Henry were best friends and he misses her so much ever since she passed away due to Sanfilippo in 2017. Learn more about their one of a kind bond in this video and share to raise awareness for Sanfilippo Syndrome. Read More