Thursday, October 1, 2009

Always Home and Unbowed

I am proud to be among the 98 bloggers teaming up with our friend Kevin at Always Home and Uncool for a simultaneous posting to help 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.

I hope you'll take a moment to read Kevin's story in his own words below. Thank you.


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 skin 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 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 blond 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.

That 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 are her scars, six to be exact, and the array of pills she takes twice a day to 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 a 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/rhondaand kevinmckeever
or www.curejm.com/team/donations.htm.


THANK YOU!



15 comments:

Mary Roy said...

At first you feel like, Oh no, not another Disease! I can't read this. Honestly I almost went away. I'm so glad I didn't. I'm sorry that my financial situation sucks, but I can pass the word on and give when I am able. I really am glad there is something I can do. I'm sorry for your suffering, but I'm sure you know what good it has also done you.

Maggie May said...

Thank you for sharing this.

Always Home and Uncool said...

Thanks for your continued support, Anna. Maybe someday I'll help you with that comedy thing. ;-)

Kelley with Amy's Angels said...

Thank goodness that 4th Dr knew what she was looking at and knew to grab all of those med students for a lesson!

Thank you for being a part of this! : )

HappyHourSue said...

Wow. I have never even heard of that. Thank goddness your angel is OK. And thank you Anna for including us. :)

Anna See said...

Thank you for sharing this. I have never heard of this before. And I am one of those parents who would taken each doc's word for it. I am so grateful you persisted.

Renee said...

Sweet friend thank you for having this posted on your blog. It is so important to know what the heck we are dealing with and the more of us that know the more of us that can share with others.

Love you. Renee xoxo

ZenMom said...

A worthy cause!

Prefers Her Fantasy Life said...

It's great that you all are doing this. Thank you.

kmoye said...

thanks for sharing this story with us.

sherri said...

wow. I have never heard of this disease before now, so glad his daughter was properly diagnosed in time. Thanks for being part of letting others know aobut his. Off to go read always home and uncool's blog now. (great blog title!)

Anna said...

I have never heard of this illness, so thank you for bringing this to everyone's attention. And nothing worse than doctors who, when they can't figure out what's wrong, would rather misdiagnose than hold their hands up and refer for more tests or a second opinion.

Anna
x

Jeanne said...

I'm so sorry your daughter has had to endure.

And so glad the doctor got the opportunity to show it to a crowd of future docs.

HermanTurnip said...

Argh! As if I don't have enough to worry about with the wife being four months along, now I get to look forward to mystery rashes and (I'm assuming) a host of other questionable afflictions on our future son. Thanks, Anna, for that. ;-)

http://terribleanalogies.com

When Pigs Fly said...

I read this on another blog. What a nice idea of all of you to do this.