- Current Age:
- Home State:
- South Carolina
- Diagnosis Date:
- July 17, 2013
- MPS/Sanfilippo Type:
- MPS III-A
- Glenn and Cara
What it felt like when we learned our child has Sanfilippo Syndrome…
Crushed and stunned. I remember it like it was yesterday. As Eliza was dancing around and playing with toys in the doctor’s office, with not a care in the world , we were given the news that would change our lives forever. As bad as the terminal diagnosis was, it wasn’t until I went home and researched it more, that I found out about the rapid degeneration and just how quickly this disease steals much of your child. The charts showing age 3 as the peak of cognitive functioning. Eliza was already 3 1/2. We cried for days.
What our child loves this most is…
The beach, balancing on her bricks, looking at her books, music, pony lessons.
How has Sanfilippo affected our entire family?
Pretty much everything about life changes in a significant way for each family member. As adults, we adjust. It’s been hard to see the impact on our son, of him watching the disease progress in his sister.
The hardest part of being a Sanfilippo parent is …
Knowing your child is going through dementia and suffering.
The biggest misconception people have about being a Sanfilippo parent is…
This is not as much of a misconception, but I think it is difficult for anyone to understand just how challenging day to day life it is for parents of Sanfilippo children. Not only is it physically non-stop when your active child depends on you for each and every basic need, but emotionally it is draining as well.
If we could tell people just one thing about Sanfilippo Syndrome, it would be…
That there is real HOPE for effective treatments. We just need help getting more research and opportunities funded.
If we could ask just one thing from the world/people, it would be…
Share the story. Become and advocate. Run a local fundraiser. You can make a difference.
Why are we asking you to donate to Cure Sanfilippo Foundation?
Because it will SAVE children’s lives.