Beckett, his parents Jarrod and Megan, and sister Kaisa.
“KEEPING HOPE ALIVE FOR BRAVE MR. B..”
– The Willich Family
BECKETT WILLICHCurrent Age: 12 Home State: Kansas Diagnosis Date: November 1, 2018 Sanfilippo Type: MPS IIIB Parents: Jarrod and Megan Sibling: Kaisa
What it felt like when we learned our child has Sanfilippo Syndrome…
Devastating, horrific, painful, despair.
What our child loves the most …
Mickey Mouse and anything Disney-movie related.
How has Sanfilippo affected our child?
Loss of speech, bolting from us, and not understanding simple tasks or commands.
How has Sanfilippo affected our entire family?
Constantly on alert, focused on taking it a day at a time, having to opt out of certain activities because it’s just too difficult to keep an eye on Beckett non-stop.
The hardest part of being a Sanfilippo parent is …
Lack of sleep, changes in behavior, having to be on point at all times, no down time, making sure he doesn’t put anything bad in his mouth (PICA).
The biggest misconception people have about being a Sanfilippo parent is …
That it’s behavior and it can be fixed by parenting.
If we could ask just one thing from the world/people, it would be …
Why are we asking you to donate to Cure Sanfilippo Foundation?
To find a cure for this horrific disease. It is emergent we find a cure to keep the hope alive!
Our Latest News
We are at a plateau (which is a good thing!) with Beckett. He’s not shown much regression in the past year. Thankful for that!