Скачать или смотреть Family ski trip is a wild success, thanks to amazing adaptive ski program

Children and their families miss out on so many experiences and opportunities that most people take for granted because of Sanfilippo Syndrome. Things like vacations, trips to the store, or a local high school basketball game on Friday night take intense planning and adaptions/accommodations, come with looks and judgement from people, and can involve setbacks and letdowns for families with Sanfilippo. So much so, that often, it’s easier to just stay home and stick to the routine.

When the Shamaly family was invited on a ski vacation, they really didn’t know whether it would even be possible. But they courageous decided to try and “to keep expectations really low.” Little did they know that their bravery resulted in an amazing experience for their family.

Josephine shares how an adaptive skiing program allowed 10-year-old Ellie to enjoy so many of the touchstone experiences of skiing – riding the ski lift, going on multiple runs down the mountain, and even jumps! (They had such a great time last year that Josephine took ski lessons all winter so she could join Ellie, Kerry, and her son out on the slopes for this year’s trip back.)

Most importantly, Josephine hopes that their experience encourages others to consider stepping out of their comfort zone and give things a try.

#lifewithsanfilippo #curesanfilippo

Special recognition to Smuggler’s Notch in Vermont for having an amazing winter adaptive skiing program that is carefully tailored to each participant’s unique needs and goals, enabling more children and families to enjoy the sport of skiing and snowboarding.


0:00 Meet Josephine and Ellie
0:25 Deciding to go on the ski trip
0:37 Exploring the available adaptive ski program
1:14 Planning for the ski lesson
1:21 How the adaptive ski program works
2:20 Ellie making jumps in the bi-ski
2:34 Doing it again the next year
3:04 Josephine’s hope for others


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 Shamaly 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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