Juvenile Myositis Diseases: One Family’s Story


“I wish I could take away your pain”, I thought tonight as I hugged my little guy after he wacked his head against the door to his bedroom. Whenever the kids are hurt, or sick, or sad, I wish I could take away their pain and make things better.

I can only imagine how it feels to be a parent of a child whose “hurt, sick, or sad” doesn’t go away with a few kisses and a little TLC. I can only imagine how frustrating it is to go from doctor to doctor, looking for answers, all while your child is not getting better.

Someone who can imagine this is Kevin, the super-cool blogger at Always Home and Uncool, who asked if I’d help spread the news and raise awareness about a disease that has hit too close to home. His daughter has juvenile myositis, a rare autoimmune disease that she was diagnosed with on this day seven years ago.

The day also happens to be his wife’s birthday. Please read his family’s story.

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Our pediatrician admitted it early on.

The rash on our 2-year-old daughter’s cheeks, joints and legs was something he’d never seen before.

The next doctor wouldn’t admit to not knowing.

He rattled off the names of several skins conditions — none of them seemingly worth his time or bedside manner — then quickly prescribed antibiotics and showed us the door.

The third doctor admitted she didn’t know much.

The biopsy of the chunk of skin she had removed from our daughter’s knee showed signs of an “allergic reaction” even though we had ruled out every allergy source — obvious and otherwise — that we could.

The fourth doctor had barely closed the door behind her when, looking at the limp blonde cherub in my lap, she admitted she had seen this before. At least one too many times before.

She brought in a gaggle of med students. She pointed out each of the physical symptoms in our daughter:

The rash across her face and temples resembling the silhouette of a butterfly.

The purple-brown spots and smears, called heliotrope, on her eyelids.

The reddish alligator-like skin, known as Gottron papules, covering the knuckles of her hands.

The onset of crippling muscle weakness in her legs and upper body.

She then had an assistant bring in a handful of pages photocopied from an old medical textbook. She handed them to my wife, whose birthday it happened to be that day.

This was her gift — a diagnosis for her little girl.

That was seven years ago — Oct. 2, 2002 — the day our daughter was found to have juvenile dermatomyositis, one of a family of rare autoimmune diseases that can have debilitating and even fatal consequences when not treated quickly and effectively.

Our daughter’s first year with the disease consisted of surgical procedures, intravenous infusions, staph infections, pulmonary treatments and worry. Her muscles were too weak for her to walk or swallow solid food for several months. When not in the hospital, she sat on our living room couch, propped up by pillows so she wouldn’t tip over, as medicine or nourishment dripped from a bag into her body.

Our daughter, Thing 1, Megan, now age 9, remembers little of that today when she dances or sings or plays soccer. All that remain with her are scars, six to be exact, and the array of pills she takes twice a day to help keep the disease at bay.

What would have happened if it took us more than two months and four doctors before we lucked into someone who could piece all the symptoms together? I don’t know.

I do know that the fourth doctor, the one who brought in others to see our daughter’s condition so they could easily recognize it if they ever had the misfortune to be presented with it again, was a step toward making sure other parents also never have to find out.

That, too, is my purpose today.

It is also my birthday gift to my wife, My Love, Rhonda, for all you have done these past seven years to make others aware of juvenile myositis diseases and help find a cure for them once and for all.

To read more about children and families affected by juvenile myositis diseases, visit Cure JM Foundation.

To make a tax-deductible donation toward JM research, please go to Megan, Rhonda and Kevin’s Cure JM page or to the Cure JM donation page.

Comments

  1. Always Home and Uncool says:

    That was a beautiful intro. Thanks for lending a hand.

  2. Always Home and Uncool says:

    That was a beautiful intro. Thanks for lending a hand.

  3. Brooke Kimball says:

    Thank you for posting this. My daughter was just diagnosed with JM. We orginally thought she had JRA, it was a complete shock when we went to the rhematologist to have that diagnosis confirmed and instead found ourselves admitting our 4 year old daughter into the hospital for an intense round of meds for 4 days. Tomorrow we should be going home after she has more blood drawn and an MRI. It is nice to know there are others out there that have gone through what we are now dealing with. It is so heart breaking to watch a young child go through this!!! I hope one day there is a cure and nobody has to watch it!

  4. Brooke Kimball says:

    Thank you for posting this. My daughter was just diagnosed with JM. We orginally thought she had JRA, it was a complete shock when we went to the rhematologist to have that diagnosis confirmed and instead found ourselves admitting our 4 year old daughter into the hospital for an intense round of meds for 4 days. Tomorrow we should be going home after she has more blood drawn and an MRI. It is nice to know there are others out there that have gone through what we are now dealing with. It is so heart breaking to watch a young child go through this!!! I hope one day there is a cure and nobody has to watch it!

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