Скачать или смотреть This is how we do it: Running errands with Sanfilippo Syndrome

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.

Come grocery shopping with the Doucette family of Saskatchewan, Canada! Find out how they navigate grocery shopping so that 5-year-old Emmett, who has Sanfilippo Syndrome Type A, can be a part of this weekly chore. Hear why it’s important that they be together as a family, what strategies Steph and Andre use to keep Emmett safe and included, and how Emmett likes to make these trips a bit exciting.


0:00 Introduction to the Doucette family
0:20 Introduction to video topic
0:33 Getting Emmett ready
0:43 Keeping Emmett safe while out (Convaid stroller, Caroline Cart, City Select Double Stroller)
1:17 Heading to the grocery store
1:35 The physical difficulties of using a store-provided cart
2:08 Keeping Emmett and his sensory-seeking behaviors while in the store
2:38 Keeping Emmett occupied in the checkout aisle
2:48 Back home and ready to play


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 Doucette 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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