- Current Age:
- Home State:
- Diagnosis Date:
- December 20, 2018
- MPS/Sanfilippo Type:
- MPS III-A
- Kirk and Erica
What it felt like when we learned our child has Sanfilippo Syndrome…
It literally felt like someone pulled the rug out from under our feet. We were devastated and heartbroken. How could this be? We always knew something wasn’t right but we never imagined it was this.
What our child loves the most…
Reagan loves to sing! It’s amazing how even though she has moderate hearing loss she can still carry a tune and belt it out! She loves Sofia the First, Elena of Avelor and Frozen. She also has a love for a good Snapchat filter.
How has Sanfilippo affected our child?
Reagan has hearing loss, speech delay and is now not sleeping that well at night. Thankfully Reagan is still learning and able to retain information at this time.
How has Sanfilippo affected our entire family?
We are heartbroken and feel like we are in survival mode right now. We are trying to keep everything as normal as possible but we have hard days knowing what the future holds.
The hardest part of being a Sanfilippo parent is …
The not knowing. The not knowing when things will happen or even if they will happen.
The biggest misconception people have about being a Sanfilippo parent is …
Pity. They want to treat us with kid gloves. I get it, I really do. But be there for us, support us and fight with us for a cure!
If we could ask just one thing from the world/people, it would be …
Help us continue to fight for a cure! It’s out there we just know it!!!
Why are we asking you to donate to Cure Sanfilippo Foundation?
All our children and future children need your support! Without funding a cure will never be found.