Imagine being in pain every day of your life for months and then suddenly you just stop walking because it hurts too much. You cannot even climb up and down the steps because it hurts to even do that. Putting on your shoes makes you cry. You wake up crying out in pain in the middle of the night and there is no medication that takes away the pain. You can no longer climb on the playground or play hide n go seek with your siblings, or run around the house and play tag. These things have all happened to my son Alex. He is 4 years old and was just recently diagnosed with a very rare and incurable disease called juvenile dermatomyositis. This disease has robbed my son of so much of his muscle strength and left him with possible permanent issues such as lupus, which he was just recently diagnosed with, as well as possible heart issues and lung issues in the future. The medications which he has to take on a daily basis are very scary and ver serious and will live him with life long side effects but the only other alternative is death, and that is not an option. 

Juvenile Dermatomyositis is a very painful and deliberating disease as well as a life threatening disease and without the proper treatment Alex will die. He has to take high dose steroids and he is now on chemotherapy with very serious side effects that will affect him for the rest of his life to help try and hopefully put this condition into remission and our insurance company only covers a portion of it. He has to go for weekly blood tests, sedated MRI's, muscle biopsies, and other painful testing. There is only a 75% remission rate for this terrible disease. 25% of children that have this condition succumb to it and die from it. A normal childhood illness turns into something much more severe for Alex because he has no immune system and his body cannot fight like a normal persons can. For example, a simple cold for him turns into pnuemonia. I am terrified of facing the possibility of losing him to this terrible disease. We still have so far to go to beat this monster and we have only really just begun. Any donations are ao greatly appreciated to help Alex beat this dreadful disease and to help put him into remission. They will go towards paying for his medical expenses and other things he needs. Thank you all so much from Alex!

FOR THOSE INTERESTED IN WHAT JM IS YOU CAN READ MORE BELOW:

Juvenvile Dermatomyositis is a rare autoimmune disease in which the body's immune system attacks its own cells and tissues. Approximately 1,000 new cases of jm are diagnoses in the United States every year. This insidious disease can attack almost all system of the body. For many children with jm, it's a challenge to simply stand up or sit down. Extreme fatigue and weak, painful muscles make walking difficult , while activities such as running or climbing up stairs can be all but impossible. Many suffering also develop a skin rash due to inflammation in the blood vessels under the skin and muscles. Painful calcium deposits(known as calcinosis), vasculitic ulcers, change in cardiac function and joint contractures are other possible complications. Esophageal and gastrointestinal inflammation is also common in children with jm, causing difficulty swallowing and severe stomach pain.

what is the prognosis for jm?

allthough medications can help alleviate the symptoms of jm, the disease has no known cure. The primary medications used to treat the symptoms of jm are immunosuppressesants, cortisteroids, and chemotherapy. These medications themselves can cause severe side effects, making jm challenging to treat. There is no cure for jm, but with advances in early diagnoses and aggressive treatment, the outcome has continued to improve. Jm is life-changing for all of these children and their families.