- Current Age:
- Home State:
- Diagnosis Date:
- August 29, 2018
- MPS/Sanfilippo Type:
- MPS III-B
- Melissa and Rick
- Mason and Evan
What it felt like when we learned our child has Sanfilippo Syndrome…
When we received her diagnosis we were completely devastated and shocked. We never thought that a disease like this would ever be our reality because of the odds and how “rare” the disease is. It has been an emotional roller coaster since, with good days and bad days. We knew that life will never be the same as it was before her diagnosis.
What our child loves this most is…
Mya loves to dance & sing, spending time with family, watching movies and the chipmunks.
How has Sanfilippo affected our child?
In the last two years, she has lost abilities and skills she once had. She has lost interest in things she used to get excited about.
How has Sanfilippo affected our entire family?
This has brought our family even closer. I don’t think we will ever get over the shock of it. Every time she changes or regresses, our hearts break even more.
The hardest part of being a Sanfilippo parent is …
Having to accept the fact that our only daughter will leave this earth before we do. The helpless feeling of not being able to fix this for her is absolutely heart wrenching.
The biggest misconception people have about being a Sanfilippo parent is …
Just how hard it is every day: physically, mentally, emotionally. It is especially frustrating the lack of knowledge of this disease and insensitivity to the severity of it.
If we could ask just one thing from the world/people, it would be…
More compassion, less passing judgment, and most importantly A CURE.
Why are we asking you to donate to Cure Sanfilippo Foundation?
Donations help go towards the possibility, the hope of saving the lives of all the children suffering with this terrible disease. It gives all of the children a chance at life.