This is Thing 1 about a month into her diagnosis of juvenile dermatomyositis in 2002. She’s nearly 3 years old in this photo.
That’s apple sauce and mashed potatoes in front of her. That’s all she could swallow because the disease had weakened her throat muscles so severely.
Soon her voice became an intermittent gargle. She began coughing frequently.
The doctors said when Thing 1 swallowed, food and drink sometimes shot upwards into her sinus cavity or slide helplessly into her lungs. This resulted in aspiration pneumonia.
Shortly after they told us this, I helped the nurse shove a NG tube up Thing 1’s nose and down into her throat so we could be sure food and medicine went where it needed to go.
Then every day, three times a day, a broad-chested Jamaican orderly would strap Thing 1 into a navy blue life-vest. It contained pulsating pistons that rapidly pounded her chest and back to try to loosen the foreign matter that had caked onto the lining of her lungs. After, he would force a vacuum tube down her mouth and try to suck the gunk out.
If he felt the contraption did not break enough of the gunk up, he would roll Thing 1 onto her stomach and administer disciplined blows with his hands as he tried in his thick tropical tones to convince her not to fight him.
Thing 1 recovered from this common complication of her autoimmune disease within a few months
Her screams during treatment – they still pierce my brain and heart, even in their distant echo, no matter how many mental walls I create to baffle the sound.
While Thing 1 is doing well though still on a handful of daily meds, other kids with juvenile myositis (JM) diseases have not been as lucky.
Mikey Galvin, above, developed PCP pneumonia as a complication from his juvenile myositis disease. He went onto the lung transplant list.
He died at age 3.
Mason Smedley, above, received his diagnosis at age 17 months. He suffered a perforated bowel from the heavy doses of steroids used to treat his JM. During surgery to remove a portion of his colon, it was discovered that he also had an enlarged heart. The prescribed steroids had also resulted in high blood pressure, a suppressed immune system, cataracts and pneumonia which left him with a scarred lung.
Mason, who has calcium deposits encasing parts of his limbs, is still plugging along. On Sept. 11, a concert will be held on his behalf in Portland, Ore., to raise funds to find a cure for his disease.
And I’ve already told you about Cole, who died two weeks ago.
You know what I need you to do; but I also need your help getting others to do the same.
On this last day of voting for the $250,000 Pepsi Refresh grant for August, I need people to get as many NEW voters as possible to text or log-in and cast ballots for Make JM a Memory.
Send an e-mail to people on your Christmas card list.
Ask people in the cubicles next to you.
Paint your car window.
Forward this post on to someone you know. Stumble it, Digg it, I don’t know – print it out and shove it under a windshield wiper. Anything.
Even if you get us one extra vote, that’s one more than we had before. One more vote closer to finding a breakthrough to end this disease.
If Cure JM wins, every dollar, every cent, of the grant money would go into research by doctors who have selflessly dedicated their professional careers to finding better treatments and a cure for a rare autoimmune disease that most people never heard of. These are true heroes who are working to create a better world for children, but they need funding to do their work.
So please, vote 3 TIMES today:
(1) Send a text vote: Text 100850 to PEPSI (73774) (standard text messaging rate apply)
(2) Use the Facebook app: http://bit.ly/CureJMonFB
(3) Vote directly from the Pepsi website site at http://www.refresheverything.com/makejmamemory
Then help us find others to do the same.
Not for me. For the children.