Eva (R) with her mom Shannon, dad Garrett and sister Anna
This new song is a very special one for me. It was written for a young girl named Eva, who is the daughter of close friends to our family. Over the past few years, we have watched the struggle this precious family has gone through as they journey the road of Eva being diagnosed with a very rare disease. With this song, my deepest hope is to help bring more awareness and raise financial support towards a cure for Eva and others like her.
I'm inviting you today to get involved with me to help find a cure for Eva and others like her.
EVA'S JOURNEY - (by her parents)
Shortly after Eva turned 5, she was diagnosed with Juvenile Dermatomyositis (JDM), a very rare muscle disease that affects roughly 2 out of a million children each year. Because JDM is such a rare autoimmune disease and considered an “orphan disease” (a disease that affects fewer than 200,000 people nationwide), it’s left behind and not researched by pharmaceutical companies. There are currently no FDA approved treatments for JDM and it’s treated much the same way as Lupus; with corticosteroids and Methotrexate (a chemotherapy drug). Prior to the treatment with steroids, the death rate of JDM was 50%. Because we have no research to tell us who will have a mild course of the disease or a more complicated course, all patients are treated with the same medications. Eva has been on treatment for 3.5 years at this point and is finally tapering her medications. While on steroids, she ceased growing entirely (3 years) and had terrible psychological side effects. We made the decision to homeschool her due to both the emotional and physical side effects of the drugs. Additionally, while limited science suggests that the sun plays a role in triggering the disease in a portion of patients, common illnesses and infections can also be triggers. We have had to avoid germs and change our lives in every way possible to get our child to remission. Cure JM is the only organization, started by JM parents, that is solely focused on raising funds to put toward research for JDM. All donations to Cure JM are tax deductible.
Purchase this song on iTUNES or BANDCAMP.
100% of the sales made will be donated directly to Cure JM.
Donate directly to Cure JM.
Your donation will help fund the research necessary to find better treatments and eventually a cure for JDM. All donations to Cure JM are tax deductible.