Riley and his mother, Mary.
“PLEASE HELP FIND A CURE AND RAISE AWARENESS.”
– Riley’s Mom
RILEY McGRAWCurrent Age: 8 Home State: New Brunswick, Canada Diagnosis Date: June 16, 2017 Sanfilippo Type: MPS IIIA Parent: Mary Siblings: Jasmine and Dominick
What it felt like when we learned our child has Sanfilippo Syndrome…
What our child loves this most is…
Hugs and cuddle time.
How has Sanfilippo affected our entire family?
It makes us sad, so we say one positive thing a day.
The hardest part of being a Sanfilippo parent is…
When we can’t communicate with Riley, as Riley can’t tell us things.
The biggest misconception people have about being a Sanfilippo parent is…
They don’t understand it until they are going through it.
If we could ask just one thing from the world/people, it would be…
Please help find a cure and raise awareness.
Why are we asking you to donate to Cure Sanfilippo Foundation?
To find a cure.
Our Latest News
Riley recently had a feeding tube placed.