Juvenile Dermatomyositis
5October 2, 2009 by esarsea
The following is a copy/paste of a post appearing on Always Home And Uncool. It is self-explanatory. Please take the time to read it. Thanks…
My Love:
Most years you ask me not to buy you anything for your birthday. This year, I listened.
However, I couldn’t let this one pass quietly.
Seven years ago today, we got the news that our sweet little girl had juvenile dermatomyositis, a strange disease neither of us had ever heard of then and most people still haven’t heard of today. It was an odd birthday gift for you, but a gift nonetheless. Although we quickly learned that it had no cure, we welcomed the fact we finally knew what was making her so ill and that there were ways it could be treated.
Since then, you have worked tirelessly to raise awareness of all the juvenile myositis diseases and raise funds to find a cure for them. I marvel at (and am jealous of) how dedicated you are and how good you are it.
However, this is your birthday. You deserve a day off.
So, for your gift, a bunch of my blogmates volunteered to spread the word for you on this day. Each has posted a piece about our struggle with getting Thing 1 diagnosed in hope of raising awareness of this rare autoimmune disease and the need to find a cure for it.
If we’re lucky, we’ll even raise a few dollars for the cause.
Happy birthday, My Love, and Happy Cure JM Awareness Day. I love you.
To learn more about JM, visit Cure JM Foundation. To make a tax-free donation to fund research into a cure, visit our personal FirstGiving page.
Thanks for the repost. Cheers! K
Our pleasure
This is what I miss about nursing: the ability to impact lives in a meaningful way. The fourth doctor…I’ve worked with many of those.
I think (not certain) this is the disease a young girl in our town has. It’s related to MD and I know she must avoid sun exposure. She’s usually the spokesperson for our Harley Fall Ride for MDA.
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