Walk through how the Bergeron family plans and manages long-distance travel to accommodate Sanfilippo Syndrome
Find out how the Bergeron family handles traveling long distances with their 8-year-old son Asher, who has Sanfilippo Syndrome Type A, to ensure that he is comfortable and safe.
Cara and Trevor share their recent adventure traveling by RV, considerations they make when planning where and how to travel, why they choose driving over flying, and things they bring along to give Asher the best sleep environment possible.
As a bonus, Cara shows you around Asher’s room to see his normal bed and what gear they use to mimic it when traveling.
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.