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Help Jessie Get Her Voice Back
$26,550 raised
89% of $30k goal
235 contributors
0 days left
Ended Apr 11, 2016
Jessie is an amazing artist, advocate, and dancer with Down syndrome. At the age of 25, she had a stroke and was diagnosed with a rare disease called Moyamoya. In January, after neurosurgery in Boston, Jessie had another stroke. Family costs mounted!

Up until August 2015, Jessie Huggett, who has Down syndrome, was a vibrant and articulate young woman.  She was passionate about many things: dancing with Propeller Dance (Canada’s foremost mixed-ability dance company,) visual art, spending time with her family and boyfriend - and letting the world know that having Down Syndrome doesn't need to limit one’s life. A national advocate for the Canadian Down Syndrome Society (see one of the videos), Jessie brought this message to television, radionewspapers and live audiences.

Late last summer, while vacationing with her family in Maine, Jessie suffered her first stroke.  She was diagnosed with Moyamoya, a rare neurovascular disorder, and told that without neurosurgery, she remained at high risk of further strokes.  Jessie's stroke impacted her ability to swallow and necessitated a liquid diet.  But Jessie fought back, regaining full form and preparing herself for surgery. 

While her parents, Nancy and Dan, researched surgery sites in Canada, Jessie's grandmother, Mary, put aside money for Jessie to get the best care possible. Sadly, Mary herself was dying, having been diagnosed with terminal melanoma just a few weeks after Jessie's stroke. Mary died in October and this was her last expression of love for her granddaughter. 

Now that it was doable, Boston Children’s Hospital offered the best choice possible. The surgeon and team had performed the operation, essentially a brain bypass, many times—a depth of experience that can not be found in Canada. In addition, the treatment would be performed in a single surgery; Canadian alternatives consisted of a two-stage process, doubling the risk of complications. Nancy and Dan were secure in the knowledge that the money left by Mary would cover the entire cost.

Jessie's surgery, on January 27, went well; everyone breathed a sigh of relief.  That evening, however, Jessie suffered another stroke, far more debilitating than the first.  Her life was in danger and the planned-for one night stay in ICU turned into eight long days and nights. Doctors' consultations, tests, extended care ....it all added up.  Jessie was discharged on February 8. Nancy and Dan faced a serious shortfall on the hospital bill.

The family is now back in Ottawa and happy to be home, but with many challenges ahead. Jessie faces a very long road to recovery, as the second stroke affected her speech, swallowing, and ability to initiate movement.  Although the spark is still in Jessie's eyes when she sees her favourite people, her progress is slow and she will require care 24/7 for some time to come. But Jessie is strong and we all hope that in time, she’ll return to form. The message Jessie has spent her life spreading, that nothing should keep anyone down, is especially personal now.

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