A B.C. teen forced to wear a neck brace for 23 hours a day because of a rare disorder has taken to the internet in hopes of funding an expensive surgery to improve her mobility.
Sarah Rush, 19, was plagued with strange medical conditions throughout her childhood, including constant bruising, migraine headaches and joints that were far too flexible.
She remained a medical mystery until a few months ago when she was diagnosed with Ehlers–Danlos syndrome, a connective tissue disorder.
The syndrome is caused by a defect in the synthesis of collagen, and means it makes her skin, muscles, joints and ligaments more elastic.
Without a neck brace, she’s at risk of twisting her neck so far she could induce a stroke.
“I kind of have to wear this brace for the rest of my life,” said Rush.
There is no cure for EDS, but there is an operation that can fuse together the vertebrae in Rush’s neck, allowing her to ditch the neck brace.
The procedure would cost nearly $70,000 and require a trip to a specialist in the U.S.
Rush has started an online campaign through the crowdsourcing website Indiegogo in hopes of raising $10,000 to help her parents with the cost of the pricey procedure.
Her video, the “Lose the Neck Brace” campaign, had netted more than $8,000 on Friday.
She is scheduled to have the operation in late June.
Despite the cost, her mother Susan Rush says their family will do whatever it takes to make it work.
“We just want her life back as soon as we can,” she said.
Click here to learn more about Sarah’s campaign.
