Family Friday Blog: The Willich Family

May 28, 2021

Get to know the Willich family – Jarrod, Megan, Beckett, and Kaisa!

Find out what the past year has been like in their lives with this week’s Family Friday.

Get a glimpse into living with Sanfilippo Syndrome through the Willich family’s honest and insightful perspective.

The Willich family lives in Kansas. Beckett turned 13 last month and was diagnosed with Sanfilippo in November 2018.

Ellie Shamaly - living with Sanfilippo Syndrome
Sadie Haywood - 2020 - b
Ellie Shamaly - living with Sanfilippo Syndrome
What has been going on in your family and for your child in the past year? What have been hard parts? What have been bright spots?

We were on a steady plateau until recently when Beckett experienced his first seizure. We knew it was coming, but we were not prepared for how scary it would be. However, medication seems to be working, and our once-happy boy is back to himself!

He absolutely loves his family, his cartoons, his Disney movies, his scooter, and trampoline just as much as he always has.

What is your child like today, compared to when they were diagnosed?

Beckett has regressed in speech considerably in the last several years but has been relatively healthy. He is not able to communicate his needs with us. But because we are with him every day, we understand his cues. We are very fortunate that his aggression is minimal and his love for his favorite people is still openly shown.

What is one thing people would be surprised to know about living with Sanfilippo?

It is like having a toddler for life. Our 13-year-old son, who should be playing ball, riding a dirt bike, hanging out with his friends, is watching Disney movies, toileting with help, supervised at all times, and has little to no connection with kids his age.

Follow the Shamalys to keep up with their journey

Facebook: Brave Mr. B

Related Posts