Ontario EDS Student gets Live Saving Surgery
MICHELLE RUBY | QMI AGENCY
BRANTFORD, ON – A packed high school gymnasium in Brantford, Ont., erupted with applause Thursday morning as Erika Crawford walked in.
Overcome with emotion, the 17-year-old was only able to speak a few words.
“It means so much to me. I can’t get over what everyone has done for me. Thank you.”
Just three weeks ago, Erika wouldn’t have been able to stand before her schoolmates at St. John’s College.
A rare disorder called Ehlers-Danlos syndrome had confined the petite 17-year-old blond to a wheelchair.
But life-saving surgery in the U.S. – in part funded by her fellow students who greeted her Thursday – has given her mobility, relieved her constant headaches and vomiting and dropping blood pressure that caused her to pass out regularly. She was in constant danger of collapse and any fall or sudden movement could have either killed her or left her a quadriplegic.
On Oct. 9, a neurosurgeon in Maryland shaved part of her skull and some vertabrae, realigned her skull and spine and used one of Erika’s ribs to stabilize her neck.
“This is a remarkable story that could have been very different,” St. John’s principal Rob Campbell told students at the surprise assembly.
OHIP declined to pay for Erika’s surgery, although her parents, Darren and Michelle, continue to appeal that decision. The final bill for diagnosis, multiple tests, Erika’s hospital stay, and travel and lodging for her parents is expected to be at least $90,000.
“She had the option of becoming disillusioned, bitter and resentful,” said Campbell. “Instead she wrote a blog talking about her condition with such grace and with a sense of being able to rise above. The community started to respond spontaneously.”
Michelle Crawford said that, to date, $80,500 has been raised for Erika through community events.
About $16,500 of that money has come through St. John’s as students there organized fundraising dances and sold bracelets.
“It’s huge,” said Michelle. “The community has really come out.
“Erika’s confidence is coming back. The students have provided a huge amount of support. She kept her story quiet for so long. It’s challenging to say, ‘I’m 17 and I’ve got a problem.’
“Now she has tons of new friends, young and old.”
There are few doctors in Ontario who are familiar with EDS. This is an important area to promote EDS Awareness.