Friday, October 2, 2009

*** Important Post!! ***

Kevin of Always Home and Uncool has asked me to post this as part of his effort to raise awareness in the blogosphere of juvenile myositis, a rare autoimmune disease his daughter was diagnosed with on this day seven years ago. The day also happens to be his wife's birthday. If this story doesn't touch your heart, check your pulse, because you're dead!! Please, if you can, make a donation. And then read up on this disease. You could be the one to help save a child's life - information is power!!!

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Kevin's story...

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 at

To make a tax-deductible donation toward JM research, go to or


Always Home and Uncool said...

You are awesome. Thanks for this.

Tam said...

Touching post!!!!!

Mighty M said...

What a nice post - thanks for sharing with all of us! Hope you have a wonderful weekend!

Deanna said...

Thank you Jeannie. I thought I knew about all of the auto immune diseases and yet I had never heard of this one. It touched my heart.

Kristina P. said...

Thank you for sharing this, Jeannie.

Christina said...

Ok wow in tears!

The Redhead Riter said...

I haven't ever heard of this disease. Thanks for the info.

Preston said...

Thanks for keeping us informed about this rare disease. I hope it helps. And can you believe you were ahead of me today on SITS? Happy SITS Saturday Sharefest!

FranticMommy said...

Great info Jeanie. I knew none of this. You are a good friend. :)
Popping by from Sat. Sharefest.

Stephanie Faris said...

Thank you for spreading the word on this. Maybe more doctors need to be informed somehow. I can't believe so many didn't know about it. That's scary.

Vickie said...

I have never heard of this disease. Thanks for sharing it with us! The story just grabbed my heart. I am glad she is a lot better now, but so sad that it took 4 doctors!!