In my column of March 30 I wrote about the health travails of Sydney Kiteley Gill, a 19-year-old from Grimsby, Ont., who has Neurogenic Thoracic Outlet Syndrome caused by bilateral cervical ribs. I was specifically concerned about OHIP declining to fund the surgery in the United States that she needed so badly.
Sydney has been constantly in pain pretty well from the age of nine and still is, but it is now much more bearable because she is on the road to recovery, having had the surgery on May 22 under the hands of Dr. Dean Donahue, who operates a Thoracic Outlet Syndrome clinic at Massachusetts General Hospital in Boston.
Sydney had undergone three surgeries in Canada with negligible effect as there are no NTOS specialists in Canada.
With OHIP out of the picture, a Hope For Sydney Gofundme campaign was started with a goal of $300,000. Sydney’s mother, Heather, who is the daughter of Bill and Rosalind Kiteley of the Sault, told me in an email that the response from the community had been overwhelming, so much so that she couldn’t believe they were halfway to their goal.
Bill, appreciative of the interest shown by saultonline, had told me he would let me know how Sydney was progressing and he came through.
“Sydney had her surgery and all went well even though it was over nine hours long,” he said in an email. The doctor says he is happy with the results but recovery will be from 18 months to two years. He says it takes nerves a very long time to heal.
“She got out of the hospital June 1 and is across the street from the hospital now in the rented apartment and she is getting stronger each day but still is in much pain. She has lost the tingling she always had in both her hands and they are getting stronger. Before the surgery she could not cut her own food because of the pain so this is very encouraging.
“They hopefully will be back in Grimsby on June 15 if her post op. goes as planned.”
He, too, said it was hard to believe the Gofundme response and how the community has supported the family, not only in Grimsby, but here in the Sault.
“It has been a very humbling experience for us all and a true testament to the good and kindness of people, so many who do not even know our family but reached out to help, not only financially but giving Sydney and the family much needed hope that all would work out.”
He said attempts at getting OHIP support were still being made but it did not look very encouraging.
Now a few words plucked from Facebook on the person at the centre of it all:
“Thanks so much, guys,” she said to well-wishers, “surgery went well. I’m recovering now, in a lot of pain, normal as expected because I had four different surgeries happen at once. I love all the support that everyone has given me.”
The walls of her apartment are totally covered with pictures, put there by her mother and grandmother, prompting Sydney to say that photo albums were boring when compared to that display.
She said she would never be able to thank Dr.Donahue enough
“I couldn’t have asked for a better stay, even with how painful it has been,“ she said. “We rocked this surgery’s socks off. I am so very thankful.”
As I said in my column in March, “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.”
“David Gill, Heather’s husband, at the time told Mike Williscraft of NewsNow in Grimsby that, “We were denied any coverage of costs. The letter (from OHIP) said the surgery would not prevent death or permanent tissue damage..
“That is highly contestable. Sydney is in constant pain, and doctors do not know what the extent of damage will be.”
A breakdown of the estimated costs for Sydney’s surgery and long rehabilitation period shows $215,000 for the cost of the surgery, which involved 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 explained that NTOS is a rare condition whereby the nerves in the upper brachial plexus (neck) are compressed, resulting in nerve pain which profoundly diminishes the quality of life for those suffering from it.
It appears Sydney has crossed over one big hurdle, the surgery, and is now on the road to recovery.
No thanks, of course, to OHIP.
As I said in my previous column on this matter, parents should not have to look outside our own health system to get treatment for their child.
DOES ANYONE think the construction on Bruce Street between Queen and Wellington Streets will ever be finished?
Wouldn’t it be nice if we could return to the days when construction was done in one year rather than having it spread out over two or three.
The length of time it took to redo some of the bridges in the area was appalling.
WHILE I AM IN A complaining mood, I think it is time the tank farm on Trunk Road was given a paint job since the tanks are one of the first things visitors from the east see.
We, apparently we, want to make things nice for those who travel Bay Street so I think the city should force this to happen on Trunk Road too.
After all, this one wouldn’t cost us a penny.