Hélène Campbell and her sister, Elizabeth, get into the groove during their photo shoot in Ottawa.

Organ / Tissue Donation and Transplantation

Ask Hélène Campbell what she loves most in this world and her first answer is invariably her family. Next; probably her friends. But probe a little further and it’s not long before you hit on Reese’s peanut butter cups.

If you know anything about Hélène, you know a few crucial things about her: she has met Justin Bieber and his grandparents, has appeared on The Ellen DeGeneres show (twice!) and yes, she has a thing for peanut butter cups. You will also know that this young woman is a fighter and a trail blazer who set her sights on spreading the word about organ and tissue donation so that others could have a second chance too.

Hélène’s story garnered national and international attention earlier this year when she sent a Twitter message to Justin Bieber and asked him to spread the word about organ donation to his 20-million-plus Twitter followers. He did. But she didn’t stop there; her cause got even more attention when she sent a video to the Ellen DeGeneres Show encouraging people to register as organ donors. Not only did Ellen respond, she surprised Hélène with a Skype interview in front of her studio audience. This was at a time when Hélène was living in Toronto waiting for a double lung transplant.

In September 2011, Ottawa native Hélène was diagnosed with idiopathic pulmonary fibrosis, an incurable disease where tissue deep in the lungs becomes stiff and thickened over time. As the lung tissue thickens, the lungs cannot properly move oxygen into the bloodstream. As a result, the body is deprived of the oxygen it needs.

Hélène was told she would need a transplant and was officially placed on the organ wait list in January, necessitating a move to Toronto to be close to the hospital. When her health began to deteriorate she was moved to a higher priority on the list. Hélène was very fortunate in that a match was found in April but sadly, many others die waiting.

Since her transplant, Hélène reports that she is doing “really well. Just living life is so great!” Her enthusiasm and positivity are infectious. When asked how she stayed optimistic during such trying times, she says the experience made her realize how much we take for granted.

“I really learned to be thankful for what I have. In the hospital, I saw all these people. Each person had their own story and their own experience. And I’ve been able to walk and talk. There were so many others at the hospital who couldn’t even do that. So rather than feel angry or resentful, I just felt thankful,” she recalls.

“You feel invincible at this age. You think that nothing will happen to you… There are a lot of people behind me who helped me and supported me and they are the unsung heroes in this story. My family has been amazing. They are just as strong as I am, and maybe even stronger, because to watch someone you love go through this and not be able to control the situation is so much more difficult.”

The love and sense of fun that she enjoys with her family was evident during our photo shoot. Hélène and her 18-year-old sister, Elizabeth, danced and hammed for the camera as only sisters/best friends can. And during my interview with Hélène, her 22-year-old sister Mary called. Hélène ended her conversation with Mary with a “love you.” There is an unbreakable and unshakeable bond in the Campbell family, and you hear it with every word Hélène speaks.

Hélène plans to write a book detailing her experience and she plans to go back to school in January. She’d like to study Spanish again. She hopes to complete a Bachelor of Arts and continue learning and growing.

While she intends to continue advocating for blood and organ and tissue donation, she plans to be “lower key” with her efforts.

“I want to continue with volunteer work on the side. I see the bigger picture. I have seen how people want to make a difference, how people want to help. And they can help right away, right now, by giving blood. It’s just as important to give blood as it is to donate organs.”

Hélène herself received blood transfusions during the transplant and recalls receiving several units of blood post-operatively.

And what advice does she have for the people she inspired? Hélène, in her humble and honest way, refuses to take credit for being an inspiration to others.

“I don’t see it as me inspiring them. I see it as the cause and people being inspired by the cause. I just happen to be saying it… I say if you feel inspired, act on it, talk to people, just do it. Start with your family, then maybe your friends. I just went ahead and started tweeting about it. It’s that simple.”

Hélène’s awareness campaign has resulted in thousands of new registrations for Ontario’s organ and tissue donor registry, giving hope to those still waiting for a transplant. And plans are already underway for Ellen to fulfill her promise to fly Hélène to her studio so the two can dance together. Look for that in the near future.


Double Lung Transplant Patient Hélène Campbell (YouTube Video)