Our son, Benjamin, was diagnosed with Juvenile Dermatomyositis (JDM) in August 2010 at age 10. JDM is a rare and incurable autoimmune disease that affects 2 to 4 children out of a million. JDM causes inflammation of the blood vessels in the skin and muscles which cause skin rashes and muscle weakness.
Three weeks prior to the diagnosis, Benjamin complained of fatigue and sore leg muscles. Within that timeframe, he went from an active 10-year-old to being too weak to walk up the steps or brush his teeth. Once diagnosed, he spent three days in our local children’s hospital receiving steroid and gamma globulin IV treatments. He was placed on oral steroids, plaquenil, calcium and folic acid. He also receives weekly injections of methotrexate, a chemotherapy drug. These medications reduce the inflammation and suppress his immune system so it would stop attacking his muscles.
He endured well over 20 IV treatments over the next 11 months as his Rheumatologist aggressively treated his disease. His last IV was in July 2011 and he was taken off oral steroids in August 2011. Thankfully, he responded well to the medication and is now in a medication induced remission. He will continue with his other medications for at least the next year in hopes of sending him into permanent remission.
However, Benjamin will have to deal with this disease for the rest of his life. Something as simple as a sunburn could cause his disease to flare which means starting all over again with the aggressive treatment.
While it was a challenging year, we are so thankful that he hasn’t had to deal with the numerous side effects and the myriad of other complications that come with JDM. Other children haven’t been as lucky. We need to find a cure.
Curtis and Fred Penel (Benjamin's uncle) will be running the Baltimore Marathon while his aunt and cousin, Carla and Alex Penel are running the 5K on October 13 along with many other JDM family and friends to raise money for Cure JM. Please consider donating to Cure JM in Benjamin’s name. The Cure JM Foundation is a non-profit organization created to find a cure for and raise awareness of this disease. More information on the organization and JDM can be found on the Cure JM website at http://www.curejm.com.
Please consider DONATING today! No amount is too small, every dollar we raise gets us one step closer to our goal!
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You can also mail your donation to:
Cure JM Foundation
836 Lynwood Drive
Encinitas, CA 92024
Corporate matching forms can be faxed to:
(760) 230-2243