- Current Age:
- Home State:
- Diagnosis Date:
- April, 2017
- MPS/Sanfilippo Type:
- MPS III-A
- Peter and Kayla
What it felt like when we learned our child has Sanfilippo Syndrome…
We were confused. It felt like someone just kicked us in the stomach. The genetic doctor kept talking but I don’t think either of us really remember what was said after “Your son has MPS III Type A and this is a terminal disease”. Our whole future changed in that moment.
What our child loves this most is…
Waylon loves to jump on his trampoline, play outside, his slip and slide, coloring, blowing bubbles and cuddling!
How has Sanfilippo affected our child?
Sanfilippo has given Waylon hearing loss, he’s non-verbal, and has behavioral issues like aggression, hyperactivity, and restlessness. He does not sleep well most nights. It has affected his ability to stay focused and on task and being at the same learning level as other children his age.
How has Sanfilippo affected our entire family?
It’s hard to take Waylon to do stuff typical families do. Waylon likes to just run – he doesn’t want to hold any one’s hand, so it’s risky taking him into crowded places for fear that he might slip out of our hand and run off. It takes a little more work and planning to take him places even if it’s just to go grocery shopping. Nothing is as simple as we thought it would be raising a 3 year old.
The hardest part of being a Sanfilippo parent is …
Knowing that our child is slowly dying and there’s not much we can do about it besides hope and pray that there becomes a cure or treatment for him. The emotional roller coaster, so many ups and downs in a single day.
The biggest misconception people have about being a Sanfilippo parent is…
People think we are the strongest parents they know, but in reality, we could come crashing down at any given moment.
If we could tell people just one thing about Sanfilippo Syndrome, it would be…
Waylon would never intentionally try to hurt any one – all he knows is love, even when he comes up to hit you, he thinks it’s a game and has a big smile on his face and gives you a hug right after. Being his parents has made us better people and has given us a better perspective of life.
If we could ask just one thing from the world/people, it would be…
Spread awareness! Share our story. Be thankful for what you have and the time you get to spend with your children.
Why are we asking you to donate to Cure Sanfilippo Foundation?
Donate to help find a cure for not just our baby but all the Sanfilippo children. Every child deserves a chance at life.