There isn’t a lot on Addison’s Christmas wish list this year and unfortunately, the one thing she really really wants is something no one can give her with 100% confidence…at least not yet. A long and healthy life. It’s so simple, yet so complicated. Aaron and I want nothing more than the gift of a long life for our brave little fighter. We are committed to making that happen but it is going to take a collective effort from our entire community to get there.
After much contemplation and discussion, we have decided to focus the goal of our life’s work on making organ transplant a cure. While short-term survival rates for transplant patients is excellent, the same cannot be said for long-term outcomes. One of the biggest barriers is the body’s immune system. There is still much to learn about how our immunological responses can lead to life-threatening acute or chronic rejection. A complex cocktail of immunosuppressant drugs keeps rejection in check, but it is a delicate balancing act between the benefits of the medication and the negatives of wide-ranging side effects. When the immune system is knocked down with drugs, the body no longer naturally fights off bacteria, viruses or cancer cells.
Already, we have faced two major bumps in the road. Addison has recently been diagnosed with chronic kidney disease. And in October, she caught pneumocystis pneumonia (PCP), a serious infection which only attacks immune-compromised individuals. It is fatal if not treated.
Aaron teases me because in the past 20 months, we have had four professional photography sessions for family pictures. The sad reality is I keep signing up for sessions because unlike other “normal” families, I really don’t know how many opportunities there will be to procrastinate. I don’t ever want to regret not having a beautiful recent family photo of all of us in joyous times. I didn’t realize how depressing that sounds until I mentioned it to a colleague last week after our Christmas session and she looked at me with great sympathy. That is my reality.
We want to help scientists and researchers unlock the secrets to the immune system so transplant patients can stop taking toxic immune-suppression drugs. We want to see an end to invasive biopsies to test for rejection. We want transplant to be a cure. We don’t want anyone else to die while waiting for a transplant. We want this to be Addison’s legacy.
So how are we going to do it? By funding transplant research. Those of you who are avid Global BC watchers may have seen a series of stories I did recently on charitable giving. I compared the amount of money donated to cystic fibrosis in BC versus transplant research. It basically worked out to an astounding $100,000+ annually per each newly-diagnosed CF patient. For transplant patients, donations totalled around $340. Please don’t think I begrudge those who give to CF research – it is an awful debilitating disease – but I know we can do better when it comes to transplant research. (Click here to find out more about transplant research in BC.)
There is still a lot of work Aaron and I need to do to get the ball rolling. We are looking into different options but ideally we’d like to set up an endowment fund to provide an annual scholarship for research. This will take a lot of money. A lot of money. Like “wow I could buy a house in Vancouver” kind of money. It may take us an entire lifetime to do it. But we have one very big reason to keep going.
Elaine, Aaron and Addison