BRANTFORD, Ont. — Two years ago, the community did what the Ontario government refused to do and raised $100,000 so a St. George, Ont., teen could get potentially life-saving surgery in Maryland.
Erika Crawford, then 17, had been diagnosed with Ehlers-Danlos syndrome and no hospitals in Canada could offer any help.
EDS is a connective tissue disorder that sucks the collagen from the joints.
Crawford had the surgery, which involved removing a rib, shaping it to support her head, and a complex cranial stabilization process.
Today, the 19-year-old is completing a college diploma in social service.
“I don’t know where she’d be today without that surgery, or even if she’d be here,” Erika’s father, Darren Crawford, said this week. “She’d definitely be in some sort of palliative care by now.”
His daughter is coping with major health issues. She gets transfusions regularly and visits a host of doctors.
The family is still fighting to get Erika’s surgery covered by Ontario’s public health insurance plan.
“We’re in the appeal process but we won’t give up,” Erika’s mother Michelle said. “Other families are going through the same thing and need help.”
The ILC Foundation (Improving the Lives of Children), which helps research, identify and educate about debilitating and hard-to-diagnose diseases, is focused on raising awareness about EDS.
Executive director Sandy Smeenk said she’s thrilled the foundation will host a second medical and patient conference in Toronto Nov. 1-2.
Smeenk said the first event last year had an amazing effect on the health-care professionals in attendance. One doctor reviewed his patient files and diagnosed several dozen people with EDS.