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.
Jan. 1 always brings up difficult feelings for me. Even before Sanfilippo syndrome entered our lives, New Year’s was a holiday for reflection — which isn’t necessarily an easy thing to process. Each year, thoughts about what the coming year has in store flood my mind. Read More