For Megan . . .

Kevin, a friend of mine and author 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. Today also happens to be his wife’s birthday. I’m honored to do my small part, joining digital hands with numerous others bloggers, to make this day not one of sorrow but of celebration, for Megan and her family, and I invite those of you who are willing to do likewise . . .

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


8 thoughts on “For Megan . . .

  1. I’m SO glad she’s doing well. Bless your friends for getting multiple opinions. I wonder just how many more people would die each year if disinterested or uncaring doctors were their only examination sources.

    And happy birthday to Rhonda. While it may not have seemed so at the time, what a wonderful gift — and one that keeps on giving.

    And bless you, Brian, for helping your friends spread the word. Who knows? Maybe some other parent will recognize this heinous illness and be able to stop it in its tracks.

  2. Brian: Thanks are not enough for your help.

    Cheers – K

  3. What a cute kid! And an inspiring story- thanks for sharing.

  4. It’s a good thing you’ve done here. 🙂

  5. I’m seeing this everywhere. I learned something from this piece, and was completely humbled.

  6. Thanks for bringing this to the attention of others. Not only does it help us learn about a disease we may have never heard of, it also shows how important it is to keep seeing doctors until you get a correct diagnosis. My mom saw three doctors before her brain tumor was diagnosed. Would have been nice if the first doctor had figured it out first.

  7. This was such a great cause. I was so glad that I was a part of it and learned about the disease. Great button BTW! 🙂

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