Thursday, October 1, 2009

The Cure for JM-A Husbands/Father's Quest-Birthday Gift!



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.

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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.

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Hey guys,

I was so excited to be asked to be a part of this for Kevin. I happen to know, through experience, that you my friends are some of the most generous and kind people out there! Thanks for taking the time to read this!

I hope this will help!

Love,

11 comments:

The Crash Test Dummy said...

I'm FIRST! I'm going to be number 100 to post for Kevin. Thanks for the inclusion!

The Crash Test Dummy said...

I'm FIRST! I'm going to be number 100 to post for Kevin. Thanks for the inclusion!

The Crash Test Dummy said...

I guess I was also 2nd. Let me be third as well.


My heart goes out to this family. What a sweet birthday present.

springrose said...

This sounds very similar to Lupus. My Aunt was diagnosed as a child and was in a wheelchair for 3 years. Then she went into remission, then more than 40 years later it came back. She has now passed away, but hopefully more people will be aware, and remember, YOU are your childs advocate, never stop trying to find the answers!

Always Home and Uncool said...

Thanks, Shelle. You are a good friend.

K

Barbaloot said...

It breaks my heart to think of all the things out there young children (and families) suffer from. Thanks for sharing the awareness, Shelle.

ZenMom said...

Great job, Shelle! :)

Mariah said...

It's amazing what Kevin is doing, how sweet! I participated too!

Shawn said...

I have never heard of this---thanks for bringing it to my attention---my heart goes out for children like this---it must be so hard to deal with.

Kritta22 said...

Wow I never knew about this either...thanks for sharing!

Kritta22 said...

Did Crash mean 100 comments or 100th poster?

Let me know, cuz you know I can talk my way to the comment box!

Here you Go SciFi Dad