This Page

has been moved to new address

Help Cure JM - doing my part.

Sorry for inconvenience...

Redirection provided by Blogger to WordPress Migration Service
Momma Kiss: Help Cure JM - doing my part.

Momma Kiss

If momma ain't happy, ain't nobody happy!

Friday, October 2, 2009

Help Cure JM - doing my part.

I read this at thelifeofsass and it touched me. Maybe I'm hormonal. Maybe it's pms. I'm guessing it's just because I'm a mom and as much as my children can get on my last nerve, they are healthy. This child was diagnosed at 2. TWO. Ugh.

Anyway - I just thought I'd repost for the parents (Always Home and Uncool) is the anniversary of the diagnoses.

Kevin, don't know you - but wishing your daughter many many more years of smiles and laughs.


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

To make a tax-deductible donation toward JM research, go to or


Blogger Sass said...

Thanks, MommaKiss.

I know Kevin appreciates it!

10/2/09, 9:02 AM  
Blogger Always Home and Uncool said...

Yes, I do. Thanks, Momma.

10/2/09, 9:32 AM  
Blogger minivan soapbox said...

Been reading Always Home for a long time now....He (and his family) are awesome. Very cool of you to re-post here.

10/2/09, 10:04 AM  
Blogger JenJen said...

Hi dammit!
I posted the button at my site with a link.
This is really going around. I agree with your sentiments; my kids piss the piss right out of me, but when faced with illness, we all jump in together.

10/2/09, 5:17 PM  
Blogger Baby Momma said...

:( So glad they got a diagnoses...
you pretty much rock for reposting.
Hugging my kiddo tonight.

10/3/09, 12:03 AM  
Blogger Annabelle said...

I had never heard of this disease. Thank you for sharing their story.

10/4/09, 6:55 PM  
Blogger MommaKiss said...

I've been reading up on JM. It's crazy - and to even think of a "juvenile" as 2 years old breaks my heart.

10/4/09, 10:23 PM  

Post a Comment

Say hi, dammit! For the love o Gah, I hope you have an e-mail that I can reply to. Plleeeease say you do!

Subscribe to Post Comments [Atom]

<< Home