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.
Due to the Coronavirus, many have been social distancing for weeks now. Staying home is much more critical for kids like Carter, who has Sanfilippo Syndrome. Here's how the Sarkar's lives have changed because of the Coronavirus - and why you should stay home for Carter. Read More
If I don’t have a topic in mind when it’s time to write a column, I read articles. I look into the lives of other siblings of special needs individuals, delving into the struggles, pains, and joys of their respective experiences. From this, I usually find something that I can relate to in my own life, and I let the writing guide me to my own ideas. Read More