As members of Coleman High School’s Family Career and Community Leaders of America chapter we, Sarah Bingham and Baryn Vann, participated in a STAR event competition this year. We placed 2nd at the Region Conference held in Waco a few weeks ago and advanced to the State Conference in Dallas where we will present our project next week with hopes of advancing to the National Conference to be held in Denver, Colorado this summer.
The name of our project is Madi’s Wish. Madi’s Wish is a project that brings awareness to the community about Juvenile Myositis, JM, a rare autoimmune disease affecting children. The goal of this project is to make families in our community aware of the main symptoms so that the disease may be diagnosed early on. Our inspiration for this project came from Madison Brown who is a fourth grader at Coleman Elementary.
Madi is the daughter of Mark and Jennifer Brown. Madi was five years old and had just started Kindergarten when her symptoms surfaced. After multiple doctor’s appointments with no answers, Madi was finally referred to Cooks Children’s Hospital in Fort Worth, Texas. It was after a round of tests at Cooks, her family received the diagnosis of Dermatomyositis.
There are 2 to 4 children per million diagnosed each year with JM. JM is a rare autoimmune disease on which the body’s immune system attacks its own cells and tissues. Approximately 1,000 new cases of JM are diagnosed in the US every year. JM affects every child in a different way. It typically affects muscle and skin, resulting in significant and sometimes severe weakness and persistent rash. For many children with JM it is a challenge to simply stand up or sit down or climb up and down stairs. (Read more below...)
Children with JM experience extreme fatigue and weakness. The exact cause of Juvenile Myositis is unknown. Current treatments are imperfect but have decreased the mortality rate to less than 3%. This devastating disease can attack almost all systems of the body. While medication can help with the symptoms there is still no cure. Research is still being done to determine the cause of JM and hopes of finding a cure.
We wanted to do our part in the cause for finding a cure so we had a fundraiser to raise money on our campus. The CISD staff paid $20 to be able to wear jeans during the month of January and raised a total of $240. We along with Madi and her family would like to encourage you to think about making a donation for a cure.
Today, Madi is doing well with her current treatment plan, but her dream is that someday there will be a cure for Juvenile Myositis.