- Current Age:
- Home State:
- North Carolina
- Diagnosis Date:
- July, 2014
- MPS/Sanfilippo Type:
- MPS III-A
- Jeremy and Christina
- Carson, Ryan, and Lucas
What it felt like when we learned our child has Sanfilippo Syndrome…
To hear from a doctor that we would have Parker taken from us at such a young age and to have a poor quality of life is devastating. We immediately broke into tears and felt incredible heartbreak. We felt lost and alone. How could life ever be good again?
TELL US ABOUT WHEN YOUR CHILD IS HAPPIEST AND WHAT HE/SHE ENJOYS THE MOST?
Honestly Parker is the happiest when we go to church. He loves to be around people and he loves to go to class and play with his friends. As soon as we walk into the building his favorite thing to do is shake everyone’s hands.
HOW HAS SANFILIPPO AFFECTED OUR CHILD?
Sanfilippo has drastically slowed Parker’s mental and motor skills. He is 3 and he has the IQ of a 2-year-old. His life consists of four different therapies.
How has Sanfilippo affected our entire family?
Sanfilippo causes every member of the family to make sacrifices and it’s very hard emotionally for everyone. Although it’s a terrible disease it has made our family stronger and more understanding of others.
The hardest part of being a Sanfilippo parent is …
The hardest thing about being a Sanfilippo parent isn’t just knowing your child has a terminal illness it’s also the unknown. How long will Parker live? When will he start to regress? How will his twin brother Lucas cope with everything when he starts to understand? Are we doing everything possible to give Parker the best life possible? Is it enough? Can we do more?
The biggest misconception people have about being a Sanfilippo parent is …
People are afraid to ask questions. But in reality, I’m like an open book, I love to talk about Parker and spread awareness.
If we could tell people just one thing about Sanfilippo Syndrome, it would be …
All of the children that we have met so far with Sanfilippo are so full of unconditional love.
If we could ask just one thing from the world/people, it would be …
To be more like these Sanfilippo kids, to be kind and so full of love.
Why are we asking you to donate to Cure Sanfilippo Foundation?
To help save Parker’s life and other kids just like him. To help give our children a chance at life!