Saturday, March 14, 2009

Two-time transplant recipient reaches out to a life-long friend who is in need

I know Julia Lyons personally and am very aware of the trials and tribulations she has gone through, already having two lung transplants and now waiting for a third. All due to the ravages of Cystic Fibrosis. On top of that, she is in dire financial circumstances and has to struggle even to pay for phone calls. My hope is that she will get her life-saving transplant soon and that benefactors will come forward to help her financially.

BY LAURA MACLEAN HUNTSVILLE FORESTER

When Carrissa Winger first met her friend Julia Lyons at Sick Kids Hospital in Toronto, she was green and Lyons was blue.

“We were both really sick, but we always had fun together,” says Winger, who at 26 has already had two liver transplants. “I think I was about 10 and she was a year younger. At the time we met, I remember feeling so bad for her family. I’d never heard of cystic fibrosis (CF). Julia would ask her mom, ‘Why is she green?’”

Winger, a Huntsville native, was born with a rare liver disease called billary atresia, which means she was born without bile ducts, which play a key role carrying bile from the liver to the gallbladder for storage and to the small intestine for use in digestion. She had her first major operation when she was just three weeks old and was around three months by the time she came home for the first time.

While she is able to lead a relatively normal, healthy life thanks to anti-rejectio medication she is required to take every day along with vitamins and regular monitoring of her blood, her friend Lyons doesn’t haveit so easy. CF is a heredity disease that affects the exocrine (mucus) glands of the lungs, liver, pancreas and intestines, causing progressive disability due to multisystem failure. There is no current cure for the disease, and amajority of individuals die young.

In fact, Lyons, who hails from Stratford, Ontario, is on a waiting list to become the first person in Canada to receive her third double-lung transplant. If the transplant is successful, she will make medical history.

Feeding tubes and oxygen tanks have become a way of life for the 25-year-old as she battles breathing problems associated with CF. The last time she had a double-lung transplant was when she was 20 and before that she had a transplant at age 11.

Winger is hoping to help Lyons in any way she can. She knows her best friend’s time is precious and that the family is financially strapped.

“Julia and I have this conversation all the time. If you have never had ice cream, you don’t know what ice cream tastes like. Being sick all the time… it’s hard for us to have friends who can understand what types of things we go through. Cystic fibrosis is a terminal illness. I think the oldest person with the disease lived until they were 45. Transplants give Julia five or six years, but it’s getting lesser and lesser. She’ll be on the waiting list for about six months.”

Winger is hoping that the Huntsville community will reach out to support her friend in her battle. Whether it be through donations or organizing a fundraiser, Winger feels compelled to help. The family faces extremely high medical bills and Lyons has chosen to live with her aunt in Pickering in order to be closer to Toronto General Hospital, where she undergoes treatment.

Winger wants to help raise awareness of CF and hopes to travel around to different schools one day, sharing her and her friend’s story and telling people about the importance of becoming organ donors.

She also stated it is a goal of hers and Lyon’s to write a book together on their
experiences in the hospital and how the two were able to find humor despite their situations.

“I just want to be able to help her,”Winger said. “I know the family has set up a trust fund for her in Stratford, but I’m hoping I can help them out here as well. In Canada, more people die waiting for transplants than the ones who actually receive them. Julia is so positive and she’s always concerned about everyone else. It doesn’t matter what’s wrong with her, she’ll call me asking, ‘How are you doing? How are you feeling?’

The risk is death. If she doesn’t have (the double lung transplant) she’s going to die. Right now, she can’t go anywhere without oxygen and she’s back on feeding tubes. I’ve got nothing on what she’s been through,” explained Winger.

Anyone wishing to make a donation to the Lyons family or to help Winger organize a fundraiser can call her at 705-789-8591 or e-mail her at sunnydisposition@hotmail.com.

“You Have the Power to Save Lives – Sign Your Donor Card & Tell Your Loved Ones of Your Decision”

Register to be a donor in Ontario or Download Donor Cards from Trillium Gift of Life Network
For other Canadian provinces click here

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

Your generosity can save up to eight lives with heart, kidneys, liver, lungs, pancreas and small intestine transplants. One tissue donor can help up to 100 other people by donating skin, corneas, bone, tendon, ligaments and heart valves


1 comment:

Julia said...

Hi Merv,
Thanks for posting the article! One error though- the reporter said I had my first transplant when I was 11, but I was actually 14. I'm pretty sure it was Carrissa who had her first transplant at 11 though. Bah, what can ya do?
Thanks again...and thanks for not posting the nasty-assed photo of me they decided to run too! :)
Julia