- Forever Age:
- 16; Lucas passed away in February 2019
- Home State:
- Diagnosis Date:
- January 25, 2007
- MPS/Sanfilippo Type:
- MPS III-B
- Jill and Chris
What it felt like when we learned our child has Sanfilippo Syndrome…
What our child loves this most is…
Social situations…he just loves being around other people.
How has Sanfilippo affected our child?
Lucas was an energetic, happy, boy. Now he can no longer walk, talk, or eat. Sanfilippo has robbed him of the most basic skills yet he still continues to smile.
How has Sanfilippo affected our entire family?
We don’t get to do things like other families do, but we try to be as active as we can. We live WITH Sanfilippo but not FOR Sanfilippo.
The hardest part of being a Sanfilippo parent is …
Watching my child slowly fade away.
The biggest misconception people have about being a Sanfilippo parent is…
..That we don’t want to be invited to activities that other families are doing.
If we could ask just one thing from the world/people, it would be…
Please don’t stare at my child.
Why are we asking you to donate to Cure Sanfilippo Foundation?
Every parent’s nightmare is to bury their child. We don’t want that nightmare to become a reality for our family or others.