- Current Age:
- Home State:
- West Virginia
- Diagnosis Date:
- March 24, 2017
- MPS/Sanfilippo Type:
- MPS III-A
- Travis and Brittney
What it felt like when we learned our child has Sanfilippo Syndrome…
When we learned of Maddie’s diagnosis I felt like my heart dropped to the floor. It was literally breaking into a thousand pieces. We immediately started mourning our child whom was still active and happy. No parent should ever have this feeling.
What our child loves the most is…
Maddie loves Dora and Diego. She loves to sing and dance and be surrounded by her friends.
How has Sanfilippo affected our entire family?
Although horrific, our family has become closer and more proactive in fighting against this disease.
The hardest part of being a Sanfilippo parent is …
Watching your child doing what they love most and knowing it will soon come to an end. As much as you want to stop it, Sanfilippo is slowly taking those precious things away from her.
The biggest misconception people have about being a Sanfilippo Parent is…
We’re sad all the time. That’s true in some aspects. But in reality, I’m enjoying life with my family more than most. We are able to look past the little things and enjoy every second we have. I would rather skip the sadness and have others join in our fight.
If we could tell people just one thing about Sanfilippo Syndrome, it would be …
It is so commonly misdiagnosed. When you feel something is wrong with your child please don’t hesitate to have all avenues explored and checked. Time is precious.
If we could ask just one thing from the world/people, it would be …
Donate! If you are wondering what the best way to help is, donate! We will never have cure without clinical trials and unfortunately funding is what it takes.