Real Runners: My Daughter Beat A Rare Juvenile Disorder

10-year-old Hannah faced a rare medical setback and ran right through it.

Photo: Jon McLaughlin
Photo: Jon McLaughlin

In October 2013, my 9-year-old daughter was diagnosed with Juvenile dermatomyositis (JDM), a rare (two in 1,000,000) ​g​ene​tic disorder that used to be misdiagnosed as muscular dystrophy. It causes muscle weakness, fatigue and clumsiness, as well as the peculiar and unique rashes that attend the disorder.

We started to notice fatigue in Hannah around earlier in the month. She was always active in sports—and all of a sudden stopped being able to run around. Within three weeks, she was unable to climb into bed, climb into our van and started falling down and hitting her head. She was kept from PE and had to refrain from physical activities at recess. We were watching our daughter fall to pieces before our eyes and felt as though our hearts had been ripped out. While waiting for an appointment with our pediatrician, we Googled like mad. Our internet search led us to the correct diagnosis, and our suspicions were confirmed with blood work and an MRI—marking the start of Hannah’s journey to health again.

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She was placed on several medications, including 60mg of prednisone, a steroid drug often used to treat autoimmune diseases, and poked and jabbed quite a bit. Through the entire ordeal, Hannah has remained positive and determined to beat her illness, answering friends’ questions about her sudden weight change due to the water-retaining properties of the steroids.

She resumed physical activity around March 2014, which included a treadmill we installed in our basement. She started off really slow, maybe a quarter-mile of walking at first. We stood at the side of the treadmill at first; we were still worried about her falling. She continued to run, eventually reaching 25 miles per week. Hannah ran her first 10K in the Deseret Classic in Salt Lake City in July 2014 and her first half marathon at the Great River Run in Nauvoo, Ill., with a time of 1:55. She was 23rd overall and 8th among females. ​Fast forward to April 2015, where Hannah ran her second half marathon in Champaign, Ill., in 1:42:18. She was the first female finisher of her age group—actually, she was the youngest runner and the only one in her age group!

While her racing accomplishments have been great to witness as parents, and fun for her as well, they have not been the purpose of her running. Her main goal? To come back 200% from her illness. She actually hates running. I hate running to keep up with her.  However, she wanted to beat her illness and trusted her doctors and parents, putting in all the hard work we suggest for her. She is a fighter and has won this war against her health. As a father, I grin ear to ear watching her pass boys in races, leaving them doing double takes at the little girl who is speeding by. I could not be more proud of Hannah. She has inspired many people to start running, including us, her parents, and her grandmother.

While her illness is currently in remission, Hannah will continue to be on some medications, have regular blood tests and make regular trips to her specialists.

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