Paying it forward – Ehlers-Danlos syndrome (EDS)

123When Erika Crawford desperately needed a complex operation that was perfected in the U.S. and not covered by OHIP, the community rallied around her cause and raised $100,000 for the bills her parents faced.

Now the Crawfords and Rose-Hill Liquidation are asking the community to help the family “pay it forward” by contributing again to the efforts of the ILC Foundation, the charity that’s helped many of those, like Erika, suffering with Ehlers-Danlos syndrome (EDS).

“I want people to see Erika and where she’s at now because of what people did for her,” says Butch McCooey, Rose-Hill’s manager.

The store held a barbecue-fundraiser last year and McCooey was astonished at the outpouring of financial help.

“Last year when we had this event she was having surgery. Now she’s dating one of our workers and is planning to be here at the barbecue,” McCooey said.

Life has changed for the teen since she was in a neck brace and a wheelchair last year.

The EDS and associated problems gave her dangerously low blood pressure and terrible headaches. She often fainted and fell if she wasn’t in a chair. Her joints were hyper-mobile and her head was no longer sitting properly on her spine.

With her parents, Darren and Michelle Crawford, Erika saw numerous Canadian doctors who were stymied by her symptoms.

It wasn’t until ILC guided them to Maryland neurosurgeon Dr. Fraser Henderson that the family finally got a diagnosis and surgery that may have saved the teen’s life.

Read more: Brantford Brant


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