The Wesley Chapel Tri Team and friends are actively training for either a half marathon or full marathon to raise money to find a cure for a a childhood disease called Juvenile Dermatomyositis.
Please help us raise money for Cure JM, a nonprofit, that is trying to find a cure for Juvenile Dermatomyositis. Morgan was diagnosed in June 2010 after developing weakness in her muscles, frequent stomach aches, a rash on her joints and face, and frequent headaches. She also injured her muscles easily due to the weakness. She had to stop participating in her favorite sport of Cheerleading and Tumbling. She could no longer ride her bike or run, and she felt miserable most days.
She went undiagnosed or misdiagnosed for about 15 months because this disease is so rare. She was first diagnosed with eczema as the rash was her first symptom and it appeared on her elbows. We didn't think much about it at first as it was some red bumps on her elbows. We tried lotion and neosporin at home. In May 2009, we took her to the doctor for them, and he gave her cream for excema. We tried various ointments and creams until April 2010 when her primary care doctor said he thought it was psoriasis. Off to the dermatologist we went. We had a hard time finding a dermatologist to see an 11 year old (even though she would turn 12 in 2 months), but we finally found one who could see her June 10th. The doctor thought it was psoriasis, but since the treatment is laser and insurance won't pay for it without a biopsy, she got a skin biopsy of her elbow and knee. A week later, the biopsy came back as Juvenile Dermatomyositis. This began our journey.
Since then, Morgan has gone from taking zero medications a day to 16 pills a day. She has also had 13 IV's, and she had over 60 tubes of blood drawn. This has resulted in many needle sticks and sometimes even being stuck 4 times in a day. She has missed 11 days of school in the first 9 weeks and has been hospitalized twice. She is tired most of the time and has daily muscle pain, daily headaches, eye pain, and frequent stomach pain.
At this time, there is no cure for Juvenile Dermatomyositis (JM). She has to take many medications that try to manage the disease and keep it as mild as possible while trying to get her to a remission. Some kids get to remission and don't have a relapse while others continue to relapse and some never get to remission. We don't know what group Morgan will fit into yet.
We are working to raise money for Cure JM so that Morgan and other kids like her don't have to suffer like this. The treatments themselves have many side effects such as changing appearance through swelling and weight gain, headaches, stomach upset, feeling tired and irritable, etc. Please help us find a cure. We thank you for your support.
Morgan was recently highlighted in an article in the Tampa Tribune. You can read the article here http://www2.tbo.com/content/2010/nov/06/PANEWSO1-girl-12-bravely-fights-rare-disease/.
She also was featured on News Channel 8 on November 23rd! http://www2.tbo.com/video/2010/nov/23/little-girls-mission-01128/
The Wesley Chapel Tri Team will also be selling shirts for $20 a piece with all proceeds going to Cure JM! Thanks very much to our sponsors - Wesley Chapel Tri Team, Stacey Handman with ReMax, Lifetime Family and Urgent Care, Elite Sports Massage, LifeDash, and Allscripts! We appreciate you providing the shirts so that we can sell the shirts to wear in the race to raise awareness!