- Current Age:
- Home State:
- Diagnosis Date:
- May 24, 2016
- MPS/Sanfilippo Type:
- Type A
- Craig and Sara
- Hannah and Addison
What it felt like when we learned our child has Sanfilippo Syndrome…
We will never forget the date and words by our doctor when we were given the devastating news. As soon as the words “I won’t beat around the bush” and “Sanfilippo” were uttered, we went numb and didn’t hear much more of what the doctor was saying. And then when he said that most kids with the disease only live into their teen years, we thought that he certainly can’t be talking about our son, who runs and jumps and laughs like any other kid.
What our child Loves the most is…
Carson loves all things sports. His favorite is baseball and wants to grow up to be the next Yadi Molina from the St. Louis Cardinals! He enjoys watching Paw Patrol and any sporting event with his Dad!
How has Sanfilippo affected our child?
Sanfilippo has caused Carson to be delayed in most aspects of his life. It also currently is causing him to have behavior issues because his brain does not process directions very well. He gets very frustrated because he doesn’t necessarily understand what is being asked of him or knows that the task is too difficult for him to complete.
How has Sanfilippo affected our entire family?
Each day, there are sad moments and unexplained tears. Somehow we have to find a way to stay positive for our daughters while still trying to illustrate the severity of the disorder to them. Life for them is just as hard as their needs are often put behind those of Carson’s.
The hardest part of being a Sanfilippo parent is …
The hardest part is knowing that each day, our son slips away more and more from us. The unknown of how long we have until he can’t talk anymore or do his favorite activities is very difficult but does make us appreciate each day with him more. When you look at Carson, he does not look much different than other kids his age, so it can be a challenge sometimes to explain his behaviors to people that do not know him well.
The biggest misconception people have about being a Sanfilippo parent is …
People think we are so strong and that God gave us a child with Sanfilippo because he knew we could handle it. In reality, we are scared and devastated that our son will be taken away from us but we still trust in God that He will guide us along this journey.
If we could tell people just one thing about Sanfilippo Syndrome, it would be …
Although Sanfilippo Syndrome is very rare, there are many more people that are carriers that don’t even know it. We must share the knowledge about it or a cure may never be found.
If we could ask just one thing from the world/people, it would be …
Be patient with our son. He may act out and be different than the rest of the kids his age, but he is sweet and loving, and we are so lucky to be his parents!
Why are we asking you to donate to Cure Sanfilippo Foundation?
We are asking people to donate to bring awareness and much needed funding for rare diseases such as Sanfilippo Syndrome and to give our son and the other sweet children a chance to live a long and happy life. Without your donations, life-saving clinical trials will not be able to continue.