Brother donates kidney to save sister
Daniella Ponticelli, CTV Winnipeg
Published Wednesday, January 6, 2016 12:22AM CST
Last Updated Wednesday, January 6, 2016 1:59PM CST
Huddled around a photo album, the Simoens family takes a timely look back at a day that changed their lives.
Twenty years ago, dad Ronald became a living kidney donor for his daughter, Cheryl. At the time, the young girl had already lived 11 years with Cystinosis; a chronic and genetic kidney disease.
“I was diagnosed at 15-months-old and rushed to the hospital many, many times. Very dehydrated, very listless and general failure to thrive,” said Simoens.
That changed with medication, and became a distant memory after the first transplant.
“We didn’t realize how suppressed her personality was because she was so sick for so long. But after the transplant, her personality just exploded and she started talking back,” said older brother, Michael.
Now 32, Simoens is active; taking on rock climbing competitions and setting her sights on a half Ironman. But in August 2015, things slowed down again when her kidneys began to fail once more.
"It definitely does put things on hold. I couldn't rock climb as much as I wanted to because of catheters and dialysis going on. But I've just never let it stop me,” said Simoens.
The average wait time for a kidney transplant in Manitoba is five to seven years; however, Simoens' family stepped in to reduce her time on dialysis.
Once Michael heard his sister needed a new kidney, he signed up to get tested. The 39-year-old said he had “a feeling” it would be him giving the gift this time, and results from the tests proved him correct.
"We're a perfect genetic match…like twins perfect; which is really rare for siblings,” said Michael, who is feeling optimistic about the procedure after speaking with doctors Tuesday.
"It's pretty much entirely laparoscopic,” said Micheal. “They inflate me like a balloon; there's a couple small punctures for the tools and a very small incision where they squeeze the kidney out. So they don't even cut through muscle.”
With advances to living donation, the Kidney Foundation of Canada hopes more people will consider making a gift while alive. In the meantime, the organization is also working to move ahead with presumed consent for deceased organ donation.
"Another strategy we strongly support... is presumed consent; where every Manitoban of adult age would be an organ donor unless they decided to opt out," said Val Dunphy, executive director for the Kidney Foundation, Manitoba branch.
In 2014, deceased donors accounted for only seven kidney donations.
More than 1,800 Manitobans live with kidney failure, and while rates are leveling off elsewhere in Canada, they continue to grow in the province.
“For donors, please consider talking to your family members, because it’s so important for them to understand your wishes,” said Simoens.
People can register to become an organ donor online.
Cheryl Simoens live with Cystinosis; a chronic and genetic kidney disease.