A former Trail resident has found an answer to a series of medical conditions that have left her in a neck brace and eating from a feeding tube in a Nelson basement suite.
Just as she was at her weakest point, 26-year-old Katrina Fontaine discovered that she had Ehlers Danlos Syndrome (EDS) and is now on an upward climb to get her life back.
The rare genetic condition, caused by a defect in the ability to produce normal collagen, causes symptoms ranging from annoying to life threatening. Collagen is a building block for the human connective tissue and body in general and acts almost like a glue that holds the body together.
Fontaine is getting ready to travel to Washington for the first of three risky surgeries, which can’t be done in Canada, but she needs financial help along the way.
“I kind of felt like I was dying for years, like I just felt like I was slowly going down hill so now that I actually have a way to get better and there is hope out there, I’m thrilled,” she said.
The 2005 J. L. Crowe graduate spent her early life into her teens in and out of the hospital without clear explanation for symptoms and medical conditions.
Among many challenges she faced, Fontaine’s leg was externally rotated from birth and had to be broken and rotated twice at 16 years old. She has had over 11 surgeries, all without knowing really why.
“If I had a dollar for every doctor that said, ‘Wow this
is weird, this doesn’t make sense’ or ‘you’re a puzzle,’ I’d seriously be a millionaire,” she added.
Fontaine went onto finish high school and post secondary education to become a pediatric social worker, which led her to relocate to Alberta.
Her tribulations peaked when Fontaine fainted and was found blue in a washroom stall at a retreat in the fall of 2012. Shortly after this she stumbled across an article on EDS, which read more like her life story.
She is now dealing with a number of neurological problems that have left her basically bed ridden and dependant upon her mom Lorraine. Fontaine moved back to the area, close to home, where she is under the care of a Nelson medical team while she awaits surgery.
The connective tissue holding her head to her neck is so weak it is causing her skull to both slide and sink onto her spine, which is causing compression of her brainstem.
When she turns her head to the right, the top of her spine turns too far and completely compresses the artery that goes into her brainstem.
Additionally, the middle of her neck is severely bent forward and her spinal cord is being compressed and stretched and at the base of her spine there is a benign mass of fat within her spinal canal, causing her spinal cord to be stuck and damaged.
There is no neurosurgeon in Canada who has completed operations needed on someone with EDS, which require significant surgical considerations, but there is an American neurosurgeon who has treated people from 40 different countries and completed over 800 operations on EDS patients with success. Fontaine leaves Saturday to get the first surgery done on Tuesday with this neurosurgeon. It will be up to six weeks of healing before she goes back for another and when all three are complete, Fontaine should have at least 80 per cent function.
Although EDS cannot be cured, she explained, the three neurosurgeries she needs will improve her quality of life and stop the progression of neurological deficits.
To add to the bill of health complications, the mother and daughter were met with further stress when they attempted to go after out-of-province and country care and get costs covered from ambulance fees and specialized nutrition.
Fontaine’s case fell through the cracks of the health care system, according to her mom Lorraine. Now living in B.C., she doesn’t qualify for financial support and is tasked with paying the bill of what could be up to $200,000.
“You gotta be kidding, this is Canada we live in?” her mom said of her frustration of wading through red tape. “The road blocks put up are so high that you just can’t jump over them.”
That’s when Fontaine’s best friend Diane Trewartha from Toronto stepped in and set up a blog and fundraising website as a means of raising the funds needed.
‘The Vertical Dream: 1 Girl, 3 Neurosurgeries, 6 Figures!’ has accumulated nearly $13,000 but still has a long way to go to make its current goal of $100,000.
To donate to Fontaine visit, http://www.youcaring.com/theverticaldream.