When Michelle Nadraszky took her daughter, Taylor, to the doctor in March of 2011 she was not expecting the news she would receive.
Nadraszky was concerned because her daughter was always fatigued, very thin, constantly thirsty and waking up frequently in the middle of the night.
“Testing showed signs of trouble with her kidneys,” Nadraszky said.
Taylor was referred to the Alberta Children’s Hospital where on Nov. 1 it was determined she was suffering from nephronophthisis, disorder of the kidneys that will eventually result in kidney failure and the need for transplant.
“She called me crying,” said Taylor’s dad, Bill, of his wife’s reaction to the news.
“What she has, in Canada, it’s one in 50,000,” Nadraszky said.
Nephronophthisis is a genetic condition that is the result of inheriting the recessive gene from both parents who are carriers of the gene. The Nadrasky’s were unaware they carried the gene and even though they are carriers Taylor still only had a one in four chance of inheriting the disease. The couples son, Jaden, is not affected.
“Jaden was tested twice and he has no problem but may still be a carrier,” Nadraszky said.
When Taylor was diagnosed with the disease her kidneys were functioning at 44 per cent. A mere 10 months later, her kidney function had reduced to 29 per cent. Kidney failure occurs at 15 per cent functioning.
“We were expecting she’d have to have a kidney transplant around her birthday in March but she leveled out and is at 26 per cent,” Nadraszky said.
The family had a difficult time in the first 10 months with lots of visits to urgent care and the hospital.
“She dehydrates very easily, which is why we’ve had a lot of emergency visits,” Nadraszky said.
However, the Nadraszky’s say Taylor is lucky because kidney disease can effect growth and some kids with the disease have to take growth hormones to compensate for the low growth effects.
“She doesn’t have to take a lot of medications but she does take a lot of vitamins,” Nadraszky said.
Taylor also has to get Eprex injections every 10 days. Eprex is a synthetic version of the naturally-occurring hormone erythropoietin that Taylor’s kidneys do not produce.
“Day to day there hasn’t been a lot of changes except she has to take her vitamins,” Bill said, adding the family can do little but wait and adjust as Taylor’s kidneys continue to lose function.
“She has her good days and bad days emotionally,” Nadraszky said. “She gets frustrated because she is sick so much.”
However, the family is not taking the disease sitting down and there is a good chance Bill will be able to donate one of his kidney’s to his daughter. Testing indicated he is a match for Taylor but it also showed antibodies that could lead to rejection and further testing will be needed before the transplant can occur.
“It’s something we always think about but there is not a lot to do,” Bill said.
When Taylor eventually receives her new kidney she will be in hospital for six weeks because the anti-rejection medications need to build in her system.
Taylor said she is not as nervous about the surgery as she was before because her doctors and her parents have helped her learn more about what to expect. However, one thing is still irking her.
“I won’t be able to do stuff for six weeks,” Taylor, 13, said. She said she will miss swimming and hanging out with friends but plans to pass much of the time reading and playing board games.
“You always wonder when you have someone with chronic illness how to help,” Nadraszky said.
That is why Nadraszky and Bill are participating in the 2013 Kidney March on Sept. 6 through 8 as a way to raise awareness and funds for the Canadian Kidney Foundation.
The 100 kilometre walk lasts three days with participants spending their evenings in tents along the route. The walk begins in Millarville and ends at Canada Olympic Park in Calgary.
“We’re excited,” Nadraszky said. “I’ve never done anything like this.”
“I think they are brave,” Taylor said of her parent’s commitment to the walk.
Both the Nadraszky’s are required to raise a minimum of $2,200 to participate in the Kidney Walk but said it is important to them and their family.
The Kidney Foundation states nearly one in 10 Canadians have kidney disease and nearly 80 per cent of the Canadians on the transplant waiting list are waiting for a kidney.
“There is no cure. This is a life-long disease and chances are in about 20 years Taylor will need another kidney,” Nadraszky said.
Right now the family is doing what they can to prepare for the day Taylor’s kidneys will fail and she will require a transplant. Bill is keeping himself in shape and healthy in case he can be his daughter’s donor and Nadraszky is doing all she can to keep her daughter healthy and her son happy by giving him the attention he needs. Taylor has recently taken up rock climbing and is participating in the cross country club at school.
The family will be taking a trip to Disney World sometime in the fall thanks to the Children’s Wish Foundation. The foundation has arranged for the family to visit Animal World Kingdom at the park so Taylor can experience an animal encounter with an elephant.
“I really like the nose and the ears and that they paint,” Taylor said of her love of elephants.
To make a donation to the Nadraszky’s efforts search their name at www.kidneymarch.ca or email the family at [email protected]
