Rare Disease Peddles Its Tricks on Child, Her Family

A framed photo sits at home on my daughter’s dresser showing her pushing a plastic sit-and-ride scooter. She is frozen at age 2: smiling, innocent, unencumbered. It was taken several years earlier at her daycare’s Fourth of July parade. The children were to ride their bikes or trikes around the courtyard but we hadn’t thought about outdoor wheels for her yet. The sit-and-ride was all we had and, being tall for her age then, she was probably already too big for that.

“She was having some problems riding and keeping up with the others so she just started pushing it around instead,” her teacher told us at the time.

Eight weeks later, my daughter started having trouble standing up after sitting “criss-cross applesauce” on the daycare floor.

Eight weeks after that and she couldn’t walk at all.

Doctors diagnosed her with juvenile dermatomyositis, part of a family of autoimmune conditions that affect just three in a million children a year. Poorly treated or not treated at all, it can have debilitating and even fatal consequences. Even going into remission, because there is no cure for this rare disease, doesn’t guarantee good health. Long-term effects of the condition and the medications to treat it can cause other issues later in life.

“Can your child keep up with his/her peers while running or at play?” That would become a constant mocking question on the health assessment forms her doctors had me fill out before every appointment.

A couple of months after her diagnosis, when hospital stays and medications finally started paying their dividends, she sat down on that same fire-engine scooter, braced her bare feet on the tile floor and pushed — one miraculous spurt of inches after another — through the foyer and into the living room toward the Christmas tree we had just put up. It was the first time she had ridden since the July 4th parade.

In a year or so, my daughter had her first bicycle with training wheels. She’s gone through several more models since that first purple-and-daisy decorated model from Super Target, most tending to gather dust and flat tires in our garage between her growth spurt. However, inevitably, just when she reached the point at which the seat could be ratcheted no higher, she’d suddenly feel inspired to ride again and request a bigger model. Such was the case a few days before she came to a dead halt in the park.

“I want to ride my bike around the circle again,” she said to me about 10 minutes earlier. The combination of words struck my ear like a foreign language given my vivid memories of her pain, weakness and immobility years before.

I motioned for her to go ahead then head for a shady place where I can marvel at her navigation of the quarter-mile track. Minutes have passed and now, there she is walking, pushing the bicycle along at her side.

“Can your child keep up with his/her peers while running or at play?” I hear in my head. “Are her joints aching? Is she weak with exhaustion? You forgot to give your daughter her meds one time last month and twice the month before that and soon you’ll be back to the days of blank white hospital wall and corticosteroids dripping down a plastic tube and into the artificial port doctors implanted in her chest, you careless moron.”

I’m walking toward her now, trying not to hurry, trying not to disappear into the sinkhole forming in my chest, trying to find my voice.

“What happened, Pumpkin?” I ask. “Why’d you stop?”

She looks down to her right.

“The chain came off.”

I look, and there it is, offside of the rear derailleur. I step back to take it all in and I see the links hang slack, forming the outline of a devilish grin.

To learn more about juvenile dermatomyositis and other myositis diseases, please visit Cure JM Foundation. Learn more about Rare Disease Day at http://rarediseaseday.us/.