- Current Age:
- Home State:
- North Carolina
- Diagnosis Date:
- June 27, 2016
- MPS/Sanfilippo Type:
- MPS III-A
- Jason and Ashley
What it felt like when we learned our child has Sanfilippo Syndrome…
There is no way to adequately express the anguish we felt when we learned that our beautiful three-month old daughter was in a fight for her life. We thought about everything we dreamed of for Sadie that she might never get to experience like; playing sports, attending prom, getting her driver’s license and her daddy walking her down the aisle. Every dream we had for our baby was instantly shattered when we learned of this devastating diagnosis.
WHAT OUR CHILD LOVES THE MOST IS…
Smiling…it’s her favorite thing to do. Sadie is such a happy little girl. She adores her pacifier and anything else she can find to put in her mouth. She absolutely loves being rocked to sleep in her mother’s arms. Sadie laughs at her parents when they are being silly with her.
How has Sanfilippo affected our entire family?
Sanfilippo is constantly on our minds. It’s much harder to take pleasure in the small joys of a new baby, like rolling over or cooing, because we know what the future brings. Each new month is bittersweet because our baby is growing and learning but we know she will soon start regressing if she doesn’t get help.
If we could ask just one thing from the world/people, it would be …
Please embrace all children with special needs as if they’re your own. You’ll never understand what these parents are going through until you experience it for yourself.
Why are we asking you to donate to Cure Sanfilippo Foundation?
Cure Sanfilippo is fighting for all children with this awful disease. They’ve worked very hard to fund the gene therapy trial that offers us all so much hope. We’re grateful that this foundation exists because it makes the Sanfilippo community stronger and brings us so much closer to the cure.