September 2008 marked a new beginning for my family -- entry into a club of extraordinary children with amazing resilience and courage. That point marked the beginning of our journey with juvenile dermatomyositis -- a journey that continues for us to this day.
Prior to that point, our daughter Morgan was a healthy pre-teen with normal problems -- what to wear, who to hang out with, when the next Twilight book would come out. In September 2008, her eyelids turned red and her face started to swell. She struggled getting up from sitting and laying down and she stopped walking up stairs all together. After 3 trips to the dermatologist, 7 trips to the pediatrician, an introduction to her pediatric rheumatologist fondly known as Dr. Lisa, an MRI and a muscle biopsy, Morgan was diagnosed with Juvenile Dermatomyositis (JDM). And that was only the beginning.
JDM is an insideous, incurable autoimmune disease that has changed Morgan and our family forever. She takes 32 pills a day, weekly chemo shots, and gets IV steroids and IVIG every 3 weeks. These infusions are day long infusions that give her migraines and leave her feeling racked for days. Although she struggles everyday with the rigors and realities of this disease, she has hopes and dreams of college and life beyond this disease. Morgan's mantra: "While I have Juvenile Dermatomyositis, it does not define me. I will not let this disease beat me."
For many children with JDM, it's a challenge to simply stand up or sit down. CureJM is a grass roots organization founded, created and managed by families of children with Juvenile Myositis. This rare disease affects approximately 2-4 children out of a million. There is very little incentive for the drug companies to do research to find a cure. CureJM's goal is to never let another child like Morgan suffer with Juvenile Myositis.
To get closer to this goal, I'm asking you to donate money to CureJM and sponsor my run in the Baltimore Marathon. I ran the Austin Marathon in 2010 and raised over $11,000. This money was instrumental in helping to fund research to find a cure. All the money that I have raised to date goes directly to funding research to find a cure. Please help me reach this goal and get closer to putting an end to this disease.