Beckett, his parents Jarrod and Megan, and sister Kaisa.


 – The Willich Family


Current 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!

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