I'm ready to give you a $10 gift card to Starbucks!! Wanna know how you can win it?! It's easy! All you have to do is go to my FB profile and click on the Make Juvenile Myositis a Memory link. Then log in and vote for Juvenile Myositis. After you've done that, you need to share it on FB so all your FB friends can vote, too. Then post to my related status update that day that you voted. The person who votes and shares it on FB the most until the end of the month will get a $10 Starbucks gift card from me. I promise!
If Juvenile Myositis stays #1 or #2, it will win $250K from Pepsi to go towards research to help find a cure for this disease. Our pastor's son, Sam, has this horrible disease. Today Sam is at the hospital for his weekly infusion. Yes, you read that right...his WEEKLY infusion. Below is something his mom, Charity, wrote to help people know more about their journey:
Brief JDM Timeline + Request for help
Several of you have walked through this JDM journey with Sam and us, but some of you are more recent friends.
For those of you that are unaware:
July 18, 2004- Sam was born a healthy, happy baby.
He was also a particularly healthy toddler.
October, 2006-Sam develops a slight rash on his face and knuckles.
2007- he stops growing, starts falling a lot, the rash persists. (The doctor thinks it eczema.) We're also told Sam's hips are shaped funny.
May, 2008- Sam can hardly walk. He asks to be carried constantly, is lethargic, fever everyday, can no longer bend down and pick up toys, can't get up from the ground on his own, can't stay sitting up with feet straight out in front of him, cannot jump, run or climb stairs. I remember he spent most of his time bent over the couch sucking his finger because he couldn't climb up or sit down.
The doctor sends us to children's hospital to test for Muscular Dystrophy.
Negative.
His knuckles swell and his joints hardly work.
He is in a lot of pain.
The doctor sends us to the Pediatric Rheumatologist to check for arthritis.
August 7, 2008- Dr. Higgins diagnoses Sam with Juvenile Dermatomyositis.
In time, we learn there's no cure, it's rare and life-threatening, and they don't know much about it. They HOPE it will go into remission in two years, but there's no guarantee of anything.
Here we are almost two years later. A few months ago, it looked like Sam might be heading into remission, but he had a flare up and we're back to weekly infusions and upping his medication.
He's been in lot of pain lately. He wakes up at night in excruciating leg pain, he tires quickly, he has to ALWAYS protect himself from the sun with long sleeves, pants and wide-brimmed hats. His arms hurt, his back hurts, and he started developing ulcers. He's very emotional due to the steroids as well. The Medications he's on are not without their risks, but I'm not up to listing all that right now.
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Edited to add:
(Written by a friend)
CureJM, a 501c(3) nonprofit organization, was founded in October 2003 to raise awareness of Juvenile Myositis (JM), a rare, painful and potentially deadly autoimmune disease that's expected to strike 1000 next year. CureJM is dedicated to finding a cure so that no child suffers another day with JM.
In the Pepsi Refresh Project (good ideas competition), vote daily. PLEASE, for the sake of sweet Sam and every other child who suffers with this awful disease!
Spread the word! VOTE 3 WAYS DAILY --
(1) Pepsi Refresh website -- http://www.refresheverything.com/makejmamemory
(2) Pepsi Refresh FB App -- http://bit.ly/CureJMonFB
(3) Text to Vote -- Text* Pepsi (73774) & put 100850 in the msg box -- (*stnd txt msg rts apl)
Now - go to FB and my profile to get started! You can vote directly through FB, text and/or sign up at the website.
**I guess I should add here, too that my Grace Central peeps don't get to play, because you're already voting!! :-)
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