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Transplant winners

By Kathy Rumleski, Free Press Reporter

August 22, 2010

Copyright 2010, London Free Press

Joanna Mitchell would watch her daughter’s every breath. At any moment, she knew it could be the baby’s last because of her enlarged heart.

Fast forward, literally, and there is little Ryley Mitchell running down the track.

Mom, on the sidelines, is bursting with pride and joy.

“That was one of the most amazing things. I watch her and I’m in tears because she shouldn’t have been here,” Mitchell says.

Ryley, 5, a heart transplant recipient competed at the Canadian Transplant Games in Quebec City as the youngest participant. She competed in bowling, track (50-metre run), swimming and ball throw, bringing home to Woodstock four gold medals, hanging in the Mitchell kitchen.

Ryley was diagnosed with dilated cardiomyopathy at two months.

She was seven months when the family knew for sure she’d need a transplant.

The main thing I remember when the doctor told us about her heart condition, I just looked at him and said, ‘Are you telling us that our child is going to die?’

“It was pretty stressful,” from being diagnosed at two months, until she was put on the waiting list for a transplant, Mitchell says.

“I was at home with her every day, watching every breath and every move. There can often be sudden deaths, when the heart just stops, so you’re always watching. You don’t sleep much.”

Once Ryley was put on the waiting list, a donor heart from the U.S. was found within 10 days. She was discharged from the hospital after another 11 days.

“To see her (now), you would not know.” The transplant has improved her quality of life greatly, her mom says, but adds, “It is a treatment. It is not a cure.”

Ryley takes three different medications for immunosuppression. She also needs cholesterol medication.

“What she takes is hard on the kidneys so she’s had issues with kidney function. We expect at some point she may need a kidney transplant,” Mitchell says. A transplanted heart normally lasts between 10 to 15 years.

Ryley is also at a greater risk for cancer because of the medication. One winter she had pneumonia four times.

Doctors monitor her closely.

What a treat, then, it was for Ryley to compete in the Games and meet other kids like her.

“She did the 50-metre dash and she had a huge smile on her face the whole time,” her mother says. She competes with other kids in other age groups, so she’s the last to reach the finish line ... but she doesn’t care, she’s just happy that she’s doing it.”

Mitchell says it was also neat to be able to meet the families of other transplant recipients.

“Just to see so many people in one spot that wouldn’t be here if it wasn’t for the fact they’d gotten an organ, is just an incredible experience. To be with other families that have gone through similar journeys ... is just so refreshing. It’s just good for her to know that there’s other kids like her, out there.”

Ryley made a new friend, Sarah Edge of Peterborough, who had a heart transplant at 18 months.

Two years ago Sarah had hoped to enter the Games when they were held in Windsor but she contracted pneumonia and spent the duration of 2008 games at the Hospital for Sick Children in Toronto.

Her mother Diane called the Games “stunning.”

“It was a wonderful experience,” says Diane. “Sarah is bilingual so she got to practise her French.”

And, of course, the recipients and their families are always grateful to donors.

“We all think of the donor and their families each and every day. At the opening ceremonies there were some donor families there and the loudness and length of the applause when they walked in was unbelievable,” Mitchell says.

“These families made a decision in their worst grief that saved other lives. I spoke to one donor mother and she was especially comforted to see what the children were able to accomplish at the Games.”

Ryley, who is quiet, says competing in swimming was the best part of the Games.

The Mitchell family has a backyard pool. “We’ve barely been able to get her out of the pool this summer.”

Mitchell hopes Ryley’s story will inspire others to register to be an organ donor.

“You would be making the decision to give the most precious gift ever — the gift of life.”

Another heart transplant recipient, world-class mountain climber and cyclist, Sylvain Bédard of Montreal, will be in London Monday.

He is on a trans-Canada tour to inspire other recipients and those who need transplants to pursue their goals. His Transformative Journey tour brings him to the London Central Library, where he will talk about his personal journey, beginning at 6:30 p.m.

kathy.rumleski@sunmedia.ca

Twitter.com/KathyatLFPress

— With files from The Peterborough Examiner

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