St. Lazare mom launches GoFundMe campaign for son with rare disease
PHOTO COURTESY VRENI SEMINCHUK
St. Lazare resident Vreni Seminchuk is appealing to the public to help raise the necessary funds for her son David, a former Hudson resident, to undergo a surgical procedure in Switzerland that would help alleviate the condition of a rare spinal condition.
For years Vreni Seminchuk’s oldest child, David, was in perfect health. “He used to be a very active person,” said the St. Lazare resident of her 47-year-old son, who is 6-foot-8 and goes by the nickname “Hightower.”
Until Tarlov cyst disease struck, David Seminchuk, a former Hudsonite who now lives in British Columbia, worked as a computer technician, airline ramp agent and most recently as a technical field agent for Shaw Communications, Vreni Seminchuk said. But in 2009 his back started to hurt, his situation progressively worsened and now he’s on disability. “Now he’s so limited in what he can do because he can’t sit,” she said. “The cysts often are in the sacrum but in total he has 13 cysts going up his spinal cord and so we’ve been looking for some answers just to give him a better quality of life.”
On May 12, she launched a $25,000 GoFundMe campaign to raise funds to help cover David’s travel and medical expenses so he can seek surgery and medical care in Switzerland.
The cysts cause debilitating pain whenever David sits down. “When you have a Tarlov cyst on the sacrum, it’s like sitting on a very pointy rock,” Seminchuk explained. Also known as perineural cysts, “some people do have them but they don’t have any symptoms of it,” she said. “But there is a small percent, like five percent or less, where it is symptomatic and it causes so much damage in the body and it is totally life changing.”
In their search for solutions, Seminchuk, David, her husband, and her two other children learned surgery could improve David’s quality of life.
Yet they discovered the Canadian medical system doesn’t recognize symptomatic Tarlov cysts as a rare disease, she said. It took years to get the Atypical Tarlov Cysts diagnosis but doctors here don’t do surgery for the condition, nor is there government assistance for out-of-country surgeries and medical care, Seminchuk said.
They found two doctors in the United States who specialize in the surgery, a complicated operation Seminchuk described as “very risky because the cysts themselves are wrapped around the membrane of the inside of the spinal cord, which is called the arachnoid. And when they do the surgery and they take away these cysts, if they touch the arachnoid it can be very, very dangerous. The person could become paralyzed.”
But the doctors are privatized. “The quote that we got from the doctor in Dallas was $60,000, that’s to do one of the cysts on his sacrum and that doesn’t include physiotherapy after,” Seminchuk said. “That is unreachable for us. It’s astronomical that kind of money for Canadians.”
Because Seminchuk is Swiss-born automatically giving her children Swiss citizenship, David learned he’s eligible for medical care in Switzerland, which reduces the cost greatly. “The moment he steps on Swiss ground he is considered a Swiss citizen and he comes under their social system and so because he’s on disability, Switzerland will also take care of him, up to a point,” she said.
“There is a doctor there and he’s a very, very, well-known surgeon and he looked at all of David’s medical records and he said ‘I will do this surgery provided when you come to Switzerland I do all the tests myself, I want all the diagnostics done in Switzerland.’ ”
She hopes readers will recognize her son’s name. “David went to school here right from the time he started kindergarten until he graduated from Hudson High School…. I’m hoping someone will say, ‘hey, I remember that guy.’ ”
Seminchuk urges people to share her GoFundMe campaign, “...Like I said to some people who just put in $20, $30, that $20 or $30 is huge because it doesn’t matter the amount, every little bit helps and so we appreciate anything people can do. If they can’t because of their circumstances we just appreciate it if they can share (the story) with other people.”
For more information on Seminchuk’s GoFundMe campaign for David, visit https://www.gofundme.com/24d6x8cs