- Current Age:
- Home State:
- Diagnosis Date:
- Nov. 1, 2018
- MPS/Sanfilippo Type:
- MPS III-B
- Jarrod and Megan
What it felt like when we learned our child has Sanfilippo Syndrome…
Devastating, horrific, painful, despair.
WHAT OUR CHILD LOVES THE MOST …
Mickey Mouse and anything Disney-movie related.
How has Sanfilippo affected our child?
Loss of speech, bolting from us, and not understanding simple tasks or commands.
How has Sanfilippo affected our entire family?
Constantly on alert, focused on taking it a day at a time, having to opt out of certain activities because it’s just too difficult to keep an eye on Beckett non-stop.
The hardest part of being a Sanfilippo parent is …
Lack of sleep, changes in behavior, having to be on point at all times, no down time, making sure he doesn’t put anything bad in his mouth (PICA).
The biggest misconception people have about being a Sanfilippo parent is …
That it’s behavior and it can be fixed by 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?
To find a cure for this horrific disease. It is emergent we find a cure to keep the hope alive!