Скачать или смотреть 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.

Life with Sanfilippo Syndrome presents unique challenges to every aspect of life. Families of children with Sanfilippo Syndrome are generously sharing how they tackle an aspect of their life to ensure their child has the best care and quality of life.

#lifewithsanfilippo #curesanfilippo

We also have tremendous appreciation and gratitude for the memories that Make-A-Wish enables Sanfilippo families and other families to make and for the referring physicians that work hard to make it happen as soon as possible. In this terrible degenerative disease, time matters so much.


0:00 Meet Megan and her son Beckett
0:15 Deciding to drive rather than fly
1:32 The best thing they brought on their trip (Safety Sleeper bed)
2:10 How the Safety Sleeper bed works
2:36 Hotel versus an AirBNB
3:21 Multiple tips for preventing elopement


Sanfilippo Syndrome is a terminal, degenerative disease that causes children to lose all the skills they’ve gained, suffer seizures and movement disorders, experience pain and suffering, dementia, and then die usually in their teen years. 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.


Get to know the Willich family: https://www.CureSanfilippoFoundation....

Learn more about Sanfilippo Syndrome: https://curesanfilippofoundation.org/...

Learn more about Cure Sanfilippo Foundation: https://curesanfilippofoundation.org/...

Help these children and families by donating: https://curesanfilippofoundation.org/...


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