|Erika Crawford. (Handout)
BRANTFORD, Ont. - Erika Crawford is a 17-year-old ticking time bomb.
The girl, from St. George, Ont., a small town about 100 km southwest of Toronto, has been diagnosed with a rare disorder that has sucked the collagen from her tissues and joints, leaving her wobbly and susceptible to a sudden movement that will lead to death.
“At this point,” says Erika’s mother, Michelle Crawford, “if someone knocks her the wrong way or she passes out and drops, she’s dead.”
There is no Canadian expert in the rare genetic condition known as Ehlers-Danlos syndrome - or EDS - so the family has reached out for help in the United States, only to find out they won’t be covered by OHIP’s out-of-province care.
Right now, Erika is in a Hamilton hospital experiencing severe headaches, blackouts, pain and weakness, but she is scheduled for an operation on Oct. 9 in Maryland with a doctor who has operated on 200 EDS patients with a 90% success rate.
The plan is to take one of Erika’s ribs and fuse it into the back of her neck to support her head. The end result will be a decrease in mobility but it will take the pressure off her artery.
“It’s not a cure because you can’t cure a connective tissue disease,” said Erika in a text message sent from her hospital bed. “It’s to save my life and allow me to walk, and hopefully fix my blinded vision in my left eye, stop the blackouts, the numbing in my legs and the paralysis.”
OHIP said it won’t pay for the surgery, but the family is going ahead anyway, paying for as much of the $60,000 bill as they can, and counting on others to help them cover the rest.
“This has been an incredibly scary, stressful, alone-feeling, watching our daughter deteriorate over the last two years with little to no help or answers,” Darren Crawford said in an e-mail to QMI Agency.
“We don’t have time for OHIP. Our daughter’s life is in danger. What would you do?”
Erika’s troubles began in the fall of 2010 when she began experiencing nausea, terrible headaches, vomiting and swelling above her left eye.
A competitive soccer player since the age of four, Erika tried to tough it out when doctors suggested her symptoms were all in her head.
By the new year, Erika had lost 25 lbs in one month span and she was exhausted. Her hair was coming out, she was vomiting from the severe headaches and her blood pressure was all over the map.
“I can still see myself crying as I combed most of my hair out,” she wrote in her own account of the last two years.
Last February - 16 months after the symptoms began - a doctor mentioned the possibility of Ehlers-Danlos syndrome. A genetics doctor confirmed the diagnosis in April.
“The only recommendations I received from the doctor was to go pick up braces .. that there is no doctor that can help us in Canada,” Erika wrote.
In a similar case, the family of Brooklyn Mills of Oakville, Ont., who also took the surgery route south of the border, now owe about $250,000 and continue to appeal to OHIP.
If care is not available in Ontario, with prior written approval, coverage will be extended to out-of-province care, but getting approval requires a series of applications and reviews. The Crawfords have been denied once and are now in the appeal process, though they have been warned the government won’t pay for anything if they go ahead on their own.
Some friends have raised a few thousand dollars in a fundraiser, and students at St. John’s College in Brantford, Ont., where Erika had been an honour student, are selling bracelets.
“My parents don’t want me to worry about our financial situation,” Erika texted Friday. “They just want their little girl to focus on getting better and not to worry about the cost of the surgery.”
In the face of the constant threat of death, Erika remains stubbornly positive.
“I have EDS but it doesn’t have me.”
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Can you help?
To help fund Erika Crawford’s operation in Maryland, contributions can be made at any CIBC branch under the account 02-952-8490783. For more information, to to the Facebook page on her struggle at http://bit.ly/ErikasEDS.