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.
And because of the pictures he's somehow obtained of me, the lengthy phone call we had the other day, and the promise of some future hot-tubbing with him and 75 other bloggers, I figured I'd agree to it.
These are Kevin's words, not mine...Thank you for reading. And please, if you'd be willing, grab the CureJM button and post it on your site. It means a lot.
****************************************************************************
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. http://www.curejm.org
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 http://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.
Posts
12 comments:
Sass -- mi hot tub es su hot tub. Thanks for helping me out. K
Wow - as a mom, that was not easy to read. I'm going to repost it.
Nothing more difficult - watching your child suffer. I'm so thankful you were able to find the answer.
Prayers to you, your wife, Megan, and all other families who struggle with JM. The immune system is a mysterious place, for sure, one that needs to be thoroughly mapped. (My husband has RA)
Oh great. Now I'm picking up diseases from Sass. It had to be one involving a rash! :-)
Joking aside, I'm so glad #4 knew what she was doing. And while it sounds like the pills are a delaying move, not a cure, thank God of the delaying move.
I have added the button to my blog. I have found that it pays to do as Sass tells me.
just read this over on Earl's site.
an amazing story.
This hits close to home for me. My mother found out she had a rare autoimmune disease when she was 42.
Thank you for sharing this with us...
Oh no! That poor girl! :-(
The button is on my sidebar, Sass.
You guys rock.
;)
It's another one of the many horrible afflictions, damn, when will it stop.
I hope people put their money where there bloggy buttons are !
Let's all see if we can help this poor girl out!
second time reading; no less meaningful...posting the button on my page, as directed. I agree; Do what Sass says.
Prayers to you, your wife, Megan, and all other families who struggle with JM. The immune system is a mysterious place, for sure, one that needs to be thoroughly mapped.
Work From Home
Post a Comment