Friday, October 02, 2009

Happy Cure JM Awareness Day

Kevin of Always Home and Uncool is a hell of a guy. I've never actually met him in person, but from what I know of him, I still feel pretty comfortable saying that. I first "met" him when he joined the crew over at DadCentric, and since then, I've enjoyed his writing both there and on his own blog. The guy's funny, friendly, and as his blog title suggests, he doesn't take him self too seriously. He's just plain likable. Between stories of hanging out with Linda Carter and getting hate mail from his son for Father's Day, you'll find posts and links related to the subject of juvenile myositis, a rare autoimmune disease that his daughter was diagnosed with on this very day seven years ago. Coincidentally, this day also happens to be his wife's birthday. Kevin asked me and a bunch of other bloggy types to post this as part of his effort to raise awareness in the blogosphere. So without further ado, here's Kevin:


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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 at www.curejm.org.

To make a tax-deductible donation toward JM research, go to www.firstgiving.com/rhondaandkevinmckeever or www.curejm.com/team/donations.htm.

3 comments:

sybil law said...

I just saw this at Avitable's, and now I KNOW this guy is definitely cool - when you're joining in, as well. ("Cause we all know the Holmes is the shizz!)
:)

Always Home and Uncool said...

We will meet in February, Holmes, and hopefully I won't make you retract any of the nice things you wrote. Peace and thanks!

K

Heather said...

Yay for that 4th doctor!

Sweet story and I'm so glad their daughter is doing much better. Anytime I hear things like this it reminds me to be grateful and give back.

Kevin seems pretty cool for such an 'uncool' guy.