- Current Age:
- Home State:
- Diagnosis Date:
- April 26, 2018
- MPS/Sanfilippo Type:
- MPS III-B
- John and Kathy
What it felt like when we learned our child has Sanfilippo Syndrome…
No words can describe the amount of emotional pain we experienced in that single, life altering moment.
What our child loves this most is…
Being an active, rambunctious little boy. He loves soccer, tee ball, basketball, playing with puzzles, hide and seek, PJ Masks, and Bubble Guppies.
How has Sanfilippo affected our child?
When we read about Sanfilippo and the symptoms associated with it, Declan’s difficulties were explained. He had trouble breathing at birth and had a short stay in the NICU. He suffered from frequent ear infections and had ear tubes placed at 2 years old. He is delayed with his speech and enrolled in therapy.
How has Sanfilippo affected our entire family?
Not a single day goes by where we don’t recognize how trivial some things now seem and how your perspectives and priorities completely change.
The hardest part of being a Sanfilippo parent is …
Feeling so helpless. It’s too hard to think that one day we may never hear him laugh again, never see him run again, never get another hug or kiss from him, never hear “I love you” again. He won’t learn to ride a bike, drive a car, graduate high school while waving to us in his cap and gown, or go to college. As a parent, you want to protect your children and knowing that there is absolutely nothing we can do to prevent the inevitable is beyond excruciating.
If we could ask just one thing from the world/people, it would be…
To imagine that your own child or loved one was diagnosed with Sanfilippo. Rare diseases need more than one day of awareness each year. They need to be discussed every single day. Please share and be an advocate for Sanfilippo.
Why are we asking you to donate to Cure Sanfilippo Foundation?
Because Sanfilippo is a terribly cruel disease that no child or family should have to endure. Because this disease takes our children away from us. Because this disease robs our children of their future and the ability to live a healthy, happy life. Cure Sanfilippo fights for these children, for treatments, and for a cure.