Young organ donation advocate's work 'doesn't end here'

Hélène Campbell, who was welcomed home to Ottawa today after recovering from a double-lung transplant surgery in Toronto, is writing a book about her high-profile experience and will continue to advocate for organ donation.

An event to mark her return to the nation's capital was held in downtown Ottawa, where Health Minister Leona Aglukkaq thanked Campbell for her tireless efforts to raise awareness about organ donation and announced $10 million in funding for transplant research.

"It's good to be home," the 21-year-old said to friends, family and supporters who were at the event. She expressed gratitude to her donor family, to everyone who has supported her and her family, and to Aglukkaq for the research investment.

"It gives us hope for the future, and I really encourage everyone to be an organ donor," she said.

Campbell was diagnosed with idopathic pulmonary fibrosis last September and moved to Toronto in January to wait for a double lung transplant, the only cure for the condition. She underwent the life-saving surgery in early April and has been on the rocky road to recovery since.

Cambell said she's feeling good but will have to follow a strict health routine that includes medication for the rest of her life to ensure her body doesn't reject the new lungs.

The young woman documented her experience publicly on a blog called A Lung Story and used social media to encourage people to sign up to be organ donors. Her campaign on Twitter grabbed the attention of pop idol Justin Bieber who threw his support behind her and it led to an appearance on The Ellen DeGeneres Show via Skype. She's also been encouraging people to create dance videos about being an organ donor and to upload them to YouTube.

Campbell described how happy she is to be home and to get back to her pre-transplant life, but said she left many people behind in Toronto who are still on organ donation waiting lists.

"Leaving Toronto has been an amazing joy, it's been great but I feel like I've been rescued from a sinking ship in the sense that I am fortunate that I'm alive here today but the people I met back in Toronto waiting on that list aren't always so fortunate," she said.

Campbell talked about another young woman her age who was taken off the list two weeks ago because she was so sick that she was no longer an eligble transplant candidate.

Campbell working on a book

She said it's amazing when families can act selflessly in a time of grief and donate their loved one's organs. Campbell encouraged everyone to follow the golden rule: do unto others as you would have them do unto you.

"If you would take an organ, why not give an organ?" she said.

Campbell is already working on a book about her experience and said she will be making another appearance on the Ellen show but isn't sure when.

"It doesn't end here," she said of her advocacy for organ donation.

Her advocacy work has made her "a beacon of light," according to Aglukkaq, who thanked Campbell for her tireless efforts.

"Hélène, you have shown grace and courage and inner strength during this difficult time and all the while keeping a great sense of humour," Aglukkaq told the young woman. "You looked beyond yourself and engaged international stars in your quest to raise awareness about organ donation. Through it all you inspired Canadians to give the gift of life."

The $10.1 million investment over five years announced by Aglukkaq comes from the Canadian Institutes of Health Research, the government's health research agency. It will be a partner with the Kidney Foundation of Canada, Cystic Fibrosis Canada, Canadian Blood Services, Genome British Columbia and Fonds de Recherche du Quebec on the project.

Spike in new registrations

The process to select a research team to receive the funding is underway and it is expected to get off the ground in early 2013. In total, the federal government and the other organizations are contributing $12.4 million over five years.

"I believe it will help more people like Hélène in the future," Aglukkaq said of the project.

Ontario's Trillium Gift of Life Network has credited Campbell's efforts to a noticeable spike in new registrations for organ donors, up to 3,000 a week from 350 as of late May.

Her commitment to raising awareness about organ donation was recognized in May when she was awarded the Queen's Diamond Jubilee Medal by Prime Minister Stephen Harper.

Campbell's recovery from her surgery was not trouble-free. She had to be hooked back up to a ventilator after she experienced trouble breathing. A few weeks later, she was again readmitted to hospital, this time with shortness of breath, then released five days later.

Campbell said Tuesday that a full recovery will take at least one year. "It's one day at a time," she said.