Team Morgan is actively training for the Gasparilla Distance Classic (www.tampabayrun.com) in Tampa, FL on March 3rd and 4th. Since Gasparilla offers distances of 5k, 8k, 15k, and half marathons. These do not have to be running events as you can walk, run, or walk/run so please join us!!! We are hoping that we will have many of our friends come do this in honor of Morgan who fights daily against a horrible condition called Juvenile Dermatomyositis, a rare autoimmune disease that affects approximately three in a million kids.
Team Morgan has a goal of raising awareness of Juvenile Dermatomyositis and of raising money for Cure JM (www.curejm.com), a 501(c)(3) non-profit organization, that is an all-volunteer group managed by families and friends of JM patients. Created specifically to find a cure for this disease, the Cure JM Foundation is working to raise awareness of JM while also providing support and information to families suffering from JM.
Morgan was diagnosed in June 2010 after developing common symptoms such as weakness in her muscles, severe fatigue, frequent stomach aches, a rash on her joints and face, and frequent headaches. She also injured herself often 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 that many doctors never treat a case of it during their careers. Even pediatric rheumatologists, who treat Dermatomyositis, often see only a handful of cases. Early and aggressive treatment is required with Juvenile Dermatomyositis. Dermatomyositis can attack the lungs and heart and can be fatal if not treated aggressively.
Once Morgan was finally diagnosed, the story finally made sense. Morgan had so many different symptoms that we never even thought that they might all be related and add up to something severe. We never even thought that her saying she wasn’t strong enough to tumble and that she was too tired to ride her bike a single mile had anything to do with the rash on her knuckles, elbows, knees, and ankles. In fact, the rashes were all different and we didn’t even realize that those were rashes and that they were on her joints! We certainly never thought about the red lines under her eyes or the purple on her eyelids. Those seemed to come and go with the sun. Weird? Yes. Serious, never dreamed that it could be. Once we started reading about it, everything became so clear. No wonder she was having so much trouble! No wonder we were constantly taking her to the doctor.
As much as it was a relief to finally understand what was happening, it was terrifying. Constantly reading about kids who had died from JM and reading the terrifying symptoms that occur with no cure was very frightening. I remember reading and reading and reading on the internet. Her doctor had never heard of Dermatomyositis. We were so very thankful to find Cure JM online. Suddenly, we had a group of other patients and parents who had so many valuable answers. They knew which doctors knew about Dermatomyositis (there are three experts who are researchers), and they knew how to explain the process. They even told us how to find the book on Myositis that they helped fund. Every day since then, they have provided support to our family. We have learned so very much by asking questions and hearing other stories.
One of the hardest parts of having an “invisible disease” like Dermatomyositis is that the patients often look fine on the outside. It is so hard for kids to explain what they feel like when they look “normal.” In the beginning, the steroids have such an outward affect that people can see it and understand. If the oral steroids are tapered and the IV steroids are given in higher doses, the appearance (thankfully) goes back to normal. At this time, it is difficult for other people to understand how trying the day is. The kids with Dermatomyositis have to often miss activities, school, and often can’t participate in the athletic things they did before getting sick. A good day for a Dermatomyositis child is different than a carefree day for a healthy child. It starts with meds and ends with meds and has a lot of pain and struggling in the middle. These kids so want to be healthy and be able to do what all the other kids do.
Morgan is doing a lot better than when she was originally diagnosed, but she is still not in remission. We are hopeful that she will one day get to remission. Meanwhile, she takes 16 pills a day and gets infusions on a monthly basis. In addition to the fatigue, headaches, stomach pain, and rash, she has side effects from the treatments. Last year alone she missed 54 days of school. She spends at least one night a month in the hospital. 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 hard with all the Cure JM families to raise money for important research to find a cure. Equally as important as the funding for research is awareness. If we can get more people to know about this rare disease, then we can help other kids get to diagnosis faster so that they aggressive treatment that is needed can begin.
Last year, 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/.
I look forward to March 3rd and 4th when Team Morgan will show up in force to help raise awareness. I also appreciate any and all donations of any dollar amount that can go to Cure JM to help fund the research that is so important to finding a cure. Our goal is to find a cure so that no other children will have to suffer with this disease.