- Current Age:
- Home State:
- Diagnosis Date:
- January 10, 2019
- MPS/Sanfilippo Type:
- MPS III-B
- Matt and Julie
What it felt like when we learned our child has Sanfilippo Syndrome…
What our child loves the most…
How has Sanfilippo affected our child?
Speech delay, extreme hyperactivity, and poor sleep.
How has Sanfilippo affected our entire family?
Our whole family is emotionally gutted.
The hardest part of being a Sanfilippo parent is …
Feeling helpless and sad knowing my child will never grow into adulthood and develop like his peers.
The biggest misconception people have about being a Sanfilippo parent is …
That my child’s behavior is a symptom of the disease and not a result of ineffective parenting.
If we could ask just one thing from the world/people, it would be …
Why are we asking you to donate to Cure Sanfilippo Foundation?
We are in a race for a cure and running out of time! Our children are dying!