- Forever Age:
- 11 – Passed away Nov. 26, 2018
- Home State:
- Diagnosis Date:
- September 5, 2012
- MPS/Sanfilippo Type:
- MPS III-A
- Byron and Ashley
- Mason and Malley
What it felt like when we learned our child has Sanfilippo Syndrome…
We were devastated and at first we were in denial and refused to believe that there was no cure available for our son. We were convinced that if we worked hard enough and prayed long enough that we’d be able to cure Tucker of this affliction so he’d live a long and fruitful life.
What our child loves this most is…
He used to be infatuated with Thomas the Train, anything with wheels on it and McDonalds Cheeseburgers.
How has Sanfilippo affected our child?
Tucker has never been able to speak. At one time he was able to make sounds to notify us when he was hungry, thirsty, or wanted our attention. Over the years he has lost his ability to eat solid food or drink. He can no longer hold a cup or eating utensil. He can no longer ambulate, he cannot sit upright, he cannot hold his head upright for long periods of time. He no longer reacts to positive or negative stimuli as he once did.
How has Sanfilippo affected our entire family?
Sanfilippo has shattered our dreams for Tucker’s future. Our daughter has been forced to sacrifice her wants and needs to make sure that Tucker is adequately cared for. Even small family outings require extensive planning and preparation in order to take Tucker along. While we know what the future holds for Tuck, we do not know when the end will come, so we literally take turns sleeping to try to keep a constant watch over him.
The hardest part of being a Sanfilippo parent is …
Knowing what the future holds for Tucker and not being able to prevent it.
If we could ask just one thing from the world/people, it would be …
Never allow these Sanfilippo children to die in vain.
Why are we asking you to donate to Cure Sanfilippo Foundation?
To give these children hope for a cure NOW versus LATER.