Canadian medical conference on Ehlers-Danlos Syndrome

Erika helped to coordinate a medical conference on Ehlers-Danlos Syndrome connecting EDS experts with Canadian neurosurgeons, geneticists and pediatricians. On Oct. 12th, experts including Dr. Fraser Henderson spoke to the group. Erika also shared her experiences.
By Susan Gamble, Brantford Expositor

Erika crawfordWhen 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.

Henderson removed one of Erika’s ribs, shaped it and placed it in her neck so it supports her head.

But the teen still has major health issues.

She receives a weekly blood transfusion and the connective tissues in her neck are stretching again.

“I may have to get more surgery but the doctor checked it out and I’m OK for now,” Erika says.

Meanwhile, she’s graduated from St. John’s College and has moved on to Mohawk College where she’s taking biotechnology courses. Her dream job is to be able to help with EDS research.

School-work, daily naps and hours of homework leave very little time for other activities but Erika has an extremely important appointment this weekend.

The foundation that’s been helping EDS kids and adults get assistance in the U.S. has successfully set up a medical conference in Oakville to connect experts in EDS treatment with Canadian neurosurgeons, geneticists and pediatricians.

Erika’s own doctor from Maryland will speak. Neurosurgeon Dr. Fraser Henderson has invented 11 devices and concepts relating to disorders of the brainstem and spinal cord.

On Saturday, Erika will stand before those doctors and tell her story.

“I’m kind of nervous, but at the same time I don’t want anyone else to have to go through what I did.”

It’s unorthodox for a non-profit to be hosting such an event, but organizer Sandy Smeenk said ILC is paying costs for the doctors to attend the event because it’s the best way to cut through red tape to get results.

“We’re trying to identify the warning flags to help doctors zero in on the disease,” Smeenk says. “It’s an opportunity to tell a really important story, but we need to be funded.”

Charity barbecue Oct. 12

An Oct. 12 charity barbecue will help the Crawford family ‘pay it forward’ by donating to the foundation that supported them substantially through Erika Crawford’s EDS ordeal.

Rose-Hill Liquidation Centre, 352 Governor’s Rd., which has adopted Erika’s cause, will donate all the proceeds from the Oct. 12 event to the ILC Foundation, a charity that supports EDS victims and is paying for an unusual gathering of neurosurgeons, geneticists and pediatricians in Oakville this weekend to help them learn more about EDS.

The barbecue, which will feature Erika as the guest of honour, runs from 10 a.m. to 4 p.m., and includes a raft of Brantford Blast give-aways, Blast players signing autographs and music from Night Moves Entertainment.

Cartoon artist Cartoon Bob will also be on hand from 10 a.m. to 12:30 p.m.

“Rose-Hill has been just amazing to us,” said Michelle Crawford.

“They’ve supported us through this entire last year and are like a second family to us.”

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