My name is Nicci and this is my story about my beautiful son Damon, aged 11.
Damon has had it harder than most kids his age - diagnosed in November last year with the life threatening, rare autoimmune disease, Juvenile Dermatomyositis (JDM) - affecting approximately 1 child PER MILLION / MILLION AND A HALF. Girls are twice more likely to get it than boys.
Damon has shown incredible strength for someone so young but each day gets harder and harder and that’s why now, its more important than ever, that we install some hope into Damon for the future.
- Flown to Brisbane via the Royal Flying Doctor Service in November 2014 where he was diagnosed with Juvenile Dermatomyositis (JDM)
- In the leadup Damon had displayed symptoms of JDM including muscle pain and skin rash (that had turned into ulcerations) but the condition was not diagnosed.
- The base medications to treat this disease are high doses of steroids (Prednisolone) and Methotrexate (basically chemotherapy medication) either via injections (administered by me) or tablets. This medication has altered Damon’s appearance drastically (significant weight gain, bloating and stretch marks). Other, more stronger medications are used if the child does not respond the standard meds.
- Since November, Damon has been hospitalised twice more, mainly due to severe pain in his arms and swelling/closing of his throat (very very scary for a boy of his age). This is one of the many life threatening complications associated with this disease. – the heart and lungs being muscles that are often affected too.
- Damon can no longer play outside in the full sun without being completely covered up with hat, sunscreen, long sleeves etc and exposure to the sun and UV rays can and does make the skin rashes much worse but could also send him back into hospital. We try to keep him indoors with the air-con on, during the hottest part of the day. Damon loved playing outside, on the trampoline, riding his bike and running around.
- This disease has affected Damon’s muscles closest to the trunk of his body ie: thighs, hips, buttocks, chest, shoulders and upper arms. Damon has to do daily exercises at home as well as physiotherapy, aqua-therapy and occupational therapy a number of times per week to help regain his strength.
- Some days Damon struggles to get out of bed and has trouble walking and because he has no strength and stability, he loses his balance very easily and has fallen a number of times. He cannot get down to sit on the ground, cannot pick things up which is very frustrating to him, and he needs help to get up off the ground.
- Damon also suffers from a mild form of Aspergers. You would think that with all the changes and restriction facing him, he would be having tantrums and breakdown etc., but you could not ask for such an amazing, laid-back, easy going 11 year old boy..... who is not only brave but courageous too!
- No research is done on Juvenile Myositis here in Australia.
- I am unable to go back to work at this point in time because we just don’t know when and if Damon will flare up again.
- It also plays havoc with Toby, Damon's 8 year old brother as he has to miss school every couple of months and my partner has to keep having time off and that certainly eats into our budget.
- This disease has effected us all...I think especially his younger brother Toby. But we are just taking it one day at a time.
WHY WE NEED HELP FOR DAMON!
In January 2016, the Cure JM foundation in America will hold their annual 3 day conference in Florida. I would like to get our family to the conference and meet with other families and children going though the same thing we are.
The top doctors and researchers of this disease will be there holding small seminars etc. for the families dealing with JM and JDM.
You can find out more about the conference here www.curejm.org
By allowing our family to meet others going through this horrible and lonely journey, we will gain hope and solidarity and give my gorgeous and brave boy some confidence that life might be able to get better.
After all that Damon has been thru..he still has a smile on his face!!
PLEASE ANY HELP YOU CAN GIVE FOR THIS BEAUTIFUL BOY WOULD BE APPRECIATED.
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