Alex, his parents Matt and Julie, his brother Jaxson, and Luna.
“WE ARE ALEX’S SANFILIPPO WARRIORS — FIGHTING FOR A CURE. GO, TEAM ALEX!”
– The Koch Family
Alex KochCurrent Age: 16 Home State: Tennessee Diagnosis Date: December 2013 Sanfilippo Type: MPS IIIB Parents: Matt and Julie Sibling: Jaxson
What it felt like when we learned our child has Sanfilippo Syndrome…
Alex received the Sanfilippo diagnosis later than most, he was 10 years old. We had searched for answers for 6 years. We were devastated when we heard the words “Sanfilippo Syndrome,” “no cure,” “no current treatments.” As a parent, you want to be able to fix the problem for your child or at least help make it better. It was paralyzing knowing we couldn’t “fix” this or “make it better.” And crippling to know this disease would only get worse and take Alex from us at a young age.
How has Sanfilippo affected our child?
Sanfilippo has taken away his independence, his ability to communicate, and most of his words. He rarely gets a full night of restful sleep. He can’t write his name anymore, go to the potty by himself, or play on a sports team with peers. He must have someone watching over him at all times.
How has Sanfilippo affected our entire family?
As much as it has been difficult for us as parents, it has impacted our younger son just as much. Sometimes the siblings are often overlooked, and we have done what we can to provide him a normal childhood, but it has been a challenge. Jaxson has often said that he wishes he had a big brother that could do normal things with on a daily basis.
The hardest part of being a Sanfilippo parent is …
Watching this disease slowly progress in your child and not have the means to stop it is the hardest part for us. Not knowing his needs or wants or how he feels is very frustrating.
The biggest misconception people have about being a Sanfilippo parent is …
That people feel sorry for us, But in reality, we don’t take life for granted and have learned to appreciate the small things.
If we could tell people just one thing about Sanfilippo Syndrome, it would be …
For us, it would be that Sanfilippo Syndrome can hide behind another diagnosis like Autism. MPS III-B is slower in progression than type A and therefore the symptoms are often not diagnosed early in a child’s life.
If we could ask just one thing from the world/people, it would be …
Help spread awareness about this disease.
Why are we asking you to donate to Cure Sanfilippo Foundation?
To assist in finding a cure for all children afflicted with this horrible disease.
Our Latest News
Alex completed the Natural History study for MPS III-B in June 2015 at Nationwide Hospital.
He continues to grow, move, run, laugh, and play basketball. He attends school with his peers.
He is happy and brings joy to all those who love him. His smile brightens any room.