I have read countless stories over the years of families being denied OHIP funding because the surgery required by a loved one could only be performed by specialists in the United States.
I have never understood it.
We pay for OHIP through our taxes, both personal and payroll. Surely if specialized treatment is not available in our country, patients should be allowed to travel to where it can be done at our collective expense, which OHIP is supposed to be all about.
Yet there is another such situation occurring at the moment, this one with a Sault connection.
Sydney Gill is a 19-year-old in Grimsby, Ont., who has Neurogenic Thoracic Outlet Syndrome caused by bilateral cervical ribs. She has been constantly in pain pretty well from the age of nine.
Sydney is the daughter of David Gill and his wife, Heather Kiteley, a Sault Ste. Marie native whose parents are the well-known Bill and Rosalind Kiteley.
Sydney has undergone three surgeries in Canada with negligible effect as there are no NTOS specialists in Canada
Heather told me that through extensive research they discovered a doctor, Dean Donahue, who operates a Thoracic Outlet Syndrome clinic at Massachusetts General Hospital in Boston
But OHIP has refused to fund what could be a considerable bill.
“We were denied any coverage of costs. The letter (from OHIP) said the surgery would not prevent death or permanent tissue damage,” David.told Mike Williscraft of NewsNow in Grimsby.
“That is highly contestable. Sydney is in constant pain, and doctors do not know what the extent of damage will be.”
Heather told me they are appealing the rejection of funding but in the meantime have started a GoFundMe page in an attempt to raise at least some of the $300,000 that is going to be required for the surgery that is scheduled to take place May 22 and the follow-up treatment that will be required..
A breakdown of the estimated costs shows $215,000 for the cost of the surgery, which will involve removing some ribs, $15,000 for related out-of-country expenses and $70,000 for ongoing care and subsequent procedures in Boston.
On the GoFundMe page, Heather explains that NTOS is a rare condition whereby the nerves in the upper brachial plexus (neck) are compressed, resulting in nerve pain and profoundly diminishing the quality of life for those suffering from it.
“Sydney’s constant pain has impacted all areas of her life,” Heather said. “Pain reaches from her neck, down each arm, across the chest, and into her back. Sydney is significantly limited in her physical abilities, and performing routine daily tasks intensifies her already high level of pain.
“Sydney is reliant upon multiple strong medications to reduce her pain. The combination of pain and medication challenge Sydney’s ability to concentrate mentally. One of her shining lights, though, is her service dog, Trooper. Trooper is Sydney’s constant companion. He can open some doors and carry some limited belongings, including Sydney’s medication bag. Trooper also places pressure on Sydney with his own weight in order to offer some limited distraction from her pain.”
Heather said Sydney’s symptoms began when she was nine, where she would complain periodically about pain radiating down her right arm. Over the next six years, with her condition still not diagnosed, the pain began radiating in her left arm as well.
At age 15, a diagnosis was finally made after Sydney suffered a broken collarbone when she fell from a horse during a jumping competition.
Medical imaging identified that she had bilateral cervical ribs, a hallmark of NTOS, and the structures responsible for her nerve compression.
Heather said while the fall led to the diagnosis of NTOS, it also resulted in Sydney suffering a significant increase in pain.
Sydney has had to suspend her studies at Grimsby Secondary School due to excessive pain but she has high hopes for the outcome of the surgery.
.“I would like to be able to have kids some day,” she told Williscraft..”I would like to graduate high school and make something of myself. I want to be a pharmaceutical technician.”
That is certainly not too much to ask and if you want to help Sydney reach these goals you can.
The GoFundMe page is at https://www.gofundme.com/f/hope-for-sydney.
Personally I think OHIP made a huge mistake in denying funding. Parents should not have to look outside our own health system to get treatment for their child.