Friday, October 2, 2009

Being Aware Can Save a Child's Life

Hot Dads is one of approximately 100 blogs helping me today raise awareness of juvenile myositis, the autoimmune disease my daughter has. Why today? It was seven years ago on this date that we found a doctor who figured out what our daughter had. It also happens to be my wife's birthday. This is our 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, part 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 the Cure JM Foundation.

To make a tax-deductible donation toward JM research, go to my personal FirstGiving page or the Cure JM donations page.


LiteralDan said...

Let's hope this sparks a wildfire of support and awareness. You've done an amazing thing today!

And Happy Birthday to your wife!

TentCamper said...

This is completely awesome...though now I am going to have to think of something as cool for Mariah's birthday.
Let's hope that this combined effort pays of in all intended ways!!!

Happy B-Day Uncool wife!!!!

OneZenMom said...

Great job, Hot Dads. :)

Janie Woods said...

I hope this post helps other people. I have a friends right now with a two year old who suffers from a seizure disorder, has heart problems, is not growing and no doctor can tell them why. They just know that they drive 600 miles a month from their house to Philly for more tests, more surgeries, you name. If only all parents could find a doctor like yours, get the greatest gift a parent can get (the saving of their child's life) and be able to educate others.


Happy Birthday, Rhonda!!

Geezees Custom Canvas Art said...

Great Job!!

Not a soccer mom said...

Astonishing! so glad to hear that you found a doctor who had seen it...How scary it must be not knowing.
Now, that i am aware, I would love to research this further and help all I can! kisses to your daughter..and happy birthday to your wife!

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