The puzzling case of Rachael Domeyer

I had a story in this morning’s Salem Statesman Journal about McKay High School junior Rachael Domeyer, whose medical condition is so far a mystery that has confounded doctors for 18 months.

Please read about her here.

I can tell you that in covering Rachael’s story over the past few weeks, I have been inspired by her courage. Each time she race on the track for McKay, she runs the risk of a shaking spell that can last the rest of the day. This week, after running the 400 meters, Rachael shook for nine hours and wasn’t able to go to sleep until 2 in the morning.

So far, doctors have determined that she doesn’t fit into any of the categories of neuromuscular disease — at least that they can find. But her movement disorder is certainly brought on by strenuous exercise most of the time. So is it her heart? Her brain? Her nervous system? Her lungs? Something else?

The family showed me a video that Rachael’s father, D.J., took while she was shaking. D.J. compares it to the shivering you would get from a quick dip in icy water. And it is sort of like that, but more severe.

Here’s the remarkable thing: Rachael has this mysterious challenge and steadfastly refuses to let it interfere with her life and her goals. She has acquired the ability to take this condition and stuff it into a box. She endures these shaking spells — up to about 70 of them so far. But she refuses to let them define who she is. Instead, they are the trials that she conquers — one at time.

Her friend, Claire Roth, said she is amazed by Rachael’s ability to stay positive and focused on her goals.

“She’s fighting for her ability to run,” Roth said. “That’s not something most of us would do. It’s absolutely incredible that she’s gone this far.”

Rachael has every intention of returning to the Class 6A state championship meet. She has every intention of running as hard as she can — without fearing that it could cause her to begin shaking.

“You want to be the one to figure out how to keep it from happening,” explained Roth. “As her friend, you want to be the one who figures out what’s wrong.”

Hopefully, the answer is coming soon. The not-knowing is the most excruciating things about this.

Previous post:

Next post: