When Addison was fighting for her life in the ICU of BC Children’s Hospital, it was impossible for me to imagine where this journey would take my little family two and a half years later. At that moment, we couldn’t even begin to comprehend what life would look like five minutes into the future. The situation was so precarious I did not allow my mind to wander beyond whatever it was going to take to save my newborn daughter’s life from moment to moment.
Thanks to another mother’s selfless act in the time of her worst nightmare, we have been able to watch in wonder and delight as Addison grows up. Felicia Hill knew something amazing was going to happen through her daughter’s death. And it did. Audrey saved more than just two people when she became one of North America’s youngest organ donors at just six days old. She gave life back to all those who love Addison and Hydee, her kidney recipient. There is no way for us to ever properly express our immense gratitude, respect and love to Felicia and her family. Without her gift, we would not get to wake up every morning to Addison’s beautiful smile, her constant stream of chatter and boundless curiosity. I am so grateful.
But I am selfish too. I want more. I want Addison to live a long and healthy life. I want to show her the wonders of the world. I want to see her graduate from high school. I want to send her off to university. I want her to find meaning in her chosen career. I want her to find love and perhaps have a child of her own. I don’t want her to die before me. That is unimaginable to me. I refuse to accept this. So this has become my mission.
Transplant is not a cure. It is a lifelong chronic medical condition that is managed by daily doses of toxic immune-suppressing drugs. These drugs can lead to kidney failure and cancer. They make it harder for Addison to fight diseases – everything from the common cold to serious infections take her a long time for recovery. She could need another heart transplant in the future because pediatric heart transplant patients tend to develop coronary artery disease, a form of rejection. But this is the way it stands right now. Research into transplant has reached a tipping point and I am confident we will see some game-changing breakthroughs within 5 to 10 years.
When I heard about the Canadian Institutes of Health Research Journalism Award 16 months ago, I knew this would be a valuable opportunity for me to put together an in-depth series on transplant research. Thanks to the support of the Global BC newsroom, my proposal was successful. For the past year, I have spent countless hours on this project, working at night after Addison’s bedtime and on weekends while my husband and fellow reporter Aaron McArthur took over primary parent duties. I have flown to Edmonton, Toronto, North Carolina and San Francisco to shoot. It took a whole team to put this series together and without the CIHR funding, none of it would have been possible.
I hope by the end of the series and by sharing my personal story, you gain an understanding of life after a transplant, complete with the incredible joys and challenges. I hope you recognize the critical importance of supporting research so one day, we can say transplant IS a cure for Addison and all the other transplant recipients.
Please talk to your family about organ donation and register as a donor at BC Transplant: http://www.transplant.bc.ca.
The Transplant Research Foundation of BC is one of the only charities in Canada that solely supports transplant research. Elaine sits on the Board of Directors. http://www.trfbc.org.
Elaine blogs about Addison’s heart transplant journey at addisonmcarthur.wordpress.com.
To find out more about how Elaine and Aaron connected with their donor family, go here.
Elaine and Aaron have launched The Addison Fund to fund transplant research. 100% of all donations will go directly to research.
Six things you need to know about organ donation
Part 1: Monday
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