|An assembly was held at St. John's College in Brantford on Thursday, Nov. 1, 2012, to welcome Erika Crawford back to the school after her successful surgery for Ehlers-Danlos syndrome (CHRISTOPHER SMITH/QMI Agency)
An oral hearing will begin in January for parents appealing to the province of Ontario to cover their daughter's surgery in the U.S.
A rare disorder called Ehlers-Danlos syndrome had confined petite 17-year-old Erika Crawford to a wheelchair.
But life-saving surgery 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.
The bill – for the hospital, specialists, extensive tests, separate diagnosis trip, travel and lodging – is expected to be well over $90,000, and the Ontario Health Insurance Plan (OHIP) has denied the family coverage for any of it.
“We just got the notice yesterday that the appeal hearing has been booked. We've submitted everything but we're still compiling more in case they need more information,” Michelle said.
Erika currently is the most prominent case of Ehler-Danlos syndrome in Ontario, but she's not the only one.
OHIP has also declined to pay for the surgery of Brooklyn Mills in Oakville and the scheduled surgery of Charlie Smith, from Kingston.
Michelle said she's heard of another girl from the Hamilton area who has also gone Stateside to see the Maryland specialist since Erika's story has gained popularity.
“Some of these young people have been told they had MS and they had no hope of being better. Since Erika's been in the media, showing there's a problem with diagnoses, we're hearing about some doctors who are doing more research and stepping up in different communities to look into EDS.”
While the surgery has made an amazing change in Erika, it hasn't taken away her EDS, which saps her body of collagen and weakens her joints. She's still taking pain medications and moving carefully but reports she's feeling great.
There are still several community events being planned to help with the Crawfords expenses.