Thursday, October 1, 2009

Raising Awarness

We interrupt our regularly scheduled blog for this special announcement
( I will get to Boobie-Thon later today or tomorrow... this trumps)



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.

5 comments:

Vodka Logic said...

A lovely post, it brought tears to my eyes. Any parents anguish just to know what is wrong with their child.
So glad to see she seems to have it under control.

Thanks for sharing.
xx

Always Home and Uncool said...

Thanks for the support, Jules!

Shelle-BlokThoughts said...

Yea Jules!

You are such an incredible person with such a big heart!

Lub ya bunches!

ZenMom said...

A very worthy cause!

Big Blue House said...

Reminds me of another sick little girl who is now 36. She was very sick when she was 2. Every 3 weeks she would become extremely sick and we went through many doctors also, some said she was spoiled, some said it was the flu...reaccuring flu?... then in the ER one night, they took her white count and found that it was way out of whack. He didn't know what she had but sent us to Fargo where they did more tests, including a liver biopsy...said she had hepatitis and everyone that had been around her had to had gama globulin shots..several times....did all they could and sent us to Rochester where they found a cyst on her liver bile duct. After a 9 hr surgery..we saw our little girl, tubes everywhere. I never cried so much as I did that day. After being in the big St Mary's Hospital in Rochester for 10 days, several were in intensive care, we took her home to start Kindergarten. I am very thankful to that doctor in the ER that night, without him we might have lost her. Now she has 4 wee ones and has gone through many bouts of kidney stones, depression, and heaven knows what else but she is 'alive' and we are very thankful to have her. Oh by the way, if you haven't figured it out yet, she goes by Just Jules. She is not 'Just' to us.