Cure CJD

Heather Larson's experiences in helping find the cure for CJD

A story from six years ago.

I struggle each year with this day. I’m not going to tell you how I spent it; that’s private. I think of my mom’s death anniversary as a sacred day. When I was a little girl, my older cousin died on Thanksgiving. It was horrible to watch my aunt bury her only daughter — and then her husband two weeks later. But that’s another story. My aunt would disappear around the time of my cousin’s death each year. I never understood it as a kid. She went somewhere every year, she never stayed home to be immersed in memories. That makes it harder. Thankfully, on this six-year anniversary, I know it will be my last in this city in which my mother died. I don’t need an annual trip to escape. I need a permanent one.

Another moment of life I never truly understood until now was what happened after my mom died. I mean, what do you do? You’ve been camped out at hospice and now you have to pack up and leave. The coroner has taken the body away. What’s left?


The day before my mom died was her 56th birthday. Someone had brought her a balloon as a gift. As we were packing up her hospice room to leave, my father took that balloon and started walking out into the common area. There was another family there that had a small child. A toddler. I don’t even really remember if the child was a boy or a girl. That’s not important — or what I remember. What I do remember is my father, who had just lost the love of his life. He presented that child with the balloon gifted to his wife and smiled, sharing a moment of joy with that child.


If you can do that on the worst day of your life, you’re going to be OK. And he was. Eventually. Me too. I think every day since, we have found a way to hand a balloon to a child in some way. That gesture must be recreated in our lives after a loss, after every door slammed in your face, after every heartbreak.

I was reminded of that tonight watching the CMA Awards as Lady Antebellum performed Hello, World. This song is about that kind of redemption. I’ve cried every time I’ve heard it lately. I’m ready to hand off that balloon again in my life, ready to have that Hello, World moment.

If you’re going through this, you’re not alone. So many of us have come before you and lost a loved one to CJD. Some of us have lost more than one. I lost everything. One day soon, I’d like to see that last life lost to CJD. I still believe in a cure; I have no other choice. That cure is the ultimate hand off of a balloon — the ultimate redemption. For those who keep searching for the cure, thank you. I have a wound that can be stitched up with it someday. When that cure is found, we will all stand together with balloons in hand, ready to let go.


November 11, 2010 - Posted by | Uncategorized

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