Erika is Doing Better But Still in Pain



Erika is doing much better after a very expensive surgery in Maryland.

By Susan Gamble, Brantford Expositor

ST. GEORGE – Erika Crawford is tired. In fact, she looks exhausted.



“She smiles broadly for a photo op at the local pub in her village, the St. George Arms, where the owner, staff and regular patrons have banded together to raise thousands of dollars for the U.S. operation she had last fall.

But as the discussion continues around a pub table, Erika looks like she could fall asleep in her chair.

“People think that since I’ve had the surgery and look good, I must be OK,” she says.

“I am feeling a lot better, but I’m still tired all the time. I have a blood disorder. I get needles every day and the pain is still there.”

It’s been three months since a remarkable surgery in Maryland likely saved Erika’s life.

A victim of Ehlers-Danlos syndrome, the 17-year-old was in constant danger last year as doctors at first couldn’t identify her problem and then told the family there was nothing that could be done.

Erika had dangerously low blood pressure and blinding headaches. Her vision was failing and she kept fainting. The family later learned any fall could have resulted in her death as the EDS had sucked away her collagen and her joints were no longer holding her head properly on her spine.

The Maryland surgeon who has become a super-specialist in helping EDS patients took one of Erika’s ribs, shaped it and placed it so it supports her head on her neck.

She’s become a poster child for other EDS sufferers in Ontario due to the great success of the surgery and several other teens and young adults have also gone for the surgery or are planning trips to Maryland.

But the surgery came at a great cost.

The final bill, not counting the first trip for diagnosis and planning or follow-up trips for checkups, came to just under $101,000.

But the community has come through in a big way. Dances and various fundraisers have put $91,400 into the Crawford’s hands.

This week, Bob Dolman of the St. George Arms added another $5,510 to that.

“We do a fundraiser for some cause every year and then have a customer appreciation night in December,” Dolman says. “We sell these little tickets for a dollar and all our suppliers donate gifts.”

Upon learning Erika was the focus of the fundraiser, Dolman says his patrons and suppliers outdid themselves assisting.

“Everybody involved needs to be thanked,” Dolman said. “To raise $5,510 is far beyond what we thought we would raise. It’s outstanding!”

The bar had about 40 prizes to give away to patrons during their customer appreciation party, where they handed out free food and some drinks.”

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