The Willich family shares their tips for having a successful Make-A-Wish trip with Sanfilippo Syndrome
On a normal day, a lot of planning, gear, and accommodations are needed to keep a child with Sanfilippo Syndrome safe and thriving. These children also thrive on routine and struggle with disruption to it. And then there are the tremendous activity levels, sensory needs, and frequent sleep disturbances, caused by Sanfilippo, to manage.
Now imagine taking that on the road. It’s a challenge for families of children with Sanfilippo to go on vacations and adventures. But many families still do! Thanks to lots of careful planning and learning along the way.
The Willich family shares how they managed things for their Make-A-Wish trip, the lessons they learned, and the tips they have for traveling for a Make-A-Wish or another other trip away from home. They are generously sharing their experience to help others wondering how to tackle travel while accommodating their unique needs.
It is caused by a single gene defect which leads to lack of a necessary enzyme in the body. This lack of enzyme results in the build-up of toxic storage in every cell and is especially harmful to the brain. This build-up causes a cascade of detrimental effects and ultimately death.
Sanfilippo Syndrome is often referred to as being like Alzheimer’s, but in children. Currently there is no FDA-approved treatment or cure for Sanfilippo Syndrome.