Walk Strong to Cure JM-Chicago hosts second annual fundraising walk May 6
All of us, when we're expecting our children, we already know how special they are going to be to us. We have dreams that they are going to be exceptional, unique, or "one in a million". Unfortunately, that can take on a totally different meaning when your child is diagnosed with a life-threatening, rare disease.
My world changed as my husband and I were sitting in a doctor's office one chilly afternoon in March with our 8-year-old little girl.
I remember the doctor saying:
• "Your child has been diagnosed with a life-threatening rare disease. It only affects about 2 children in every 1 million."
• "Your child's is a very sick little girl. Her body is attacking itself and we need to give her strong doses of steroids, infusions, and medications immediately."
• "Your child should not go to any amusement parks or jump on any trampolines because her muscles are so weak and broken down that she could severely injure herself."
• "Your child should limit going outside between 10 a.m. and 4 p.m., as the sun's UVA and UVB rays can cause her disease to flare up and get worse."
My heart was racing, I had tears in my eyes, my mind went blank, but I knew our lives had changed forever. Our daughter, Jessica, was diagnosed with Juvenile Dermatomyositis (JDM) on that cold day in March of 2011. She was just 8 years old and in second grade. We struggled for a long time to determine why she had several strange rashes on different places on her body, including her face and most of her joints. We didn't understand why she seemed so "lazy" and thought maybe she had a lot of "growing pains". After seeing several doctors who were perplexed, we finally received a diagnosis.
JDM is an extremely rare disease that only affects about 2 children in every million. It can affect virtually any system of the body: the heart, lungs, skin, muscles, and more.
Thousands of children in the U.S., with many in the greater Chicago area, have been diagnosed with Juvenile Myositis (JM), a group of rare autoimmune diseases in which the body's immune system attacks its own cells and tissues. JM can cause pain, weakness, inability to walk and disfigurement. Children with more severe courses of the disease may also suffer from heart and lung complications, calcinosis (small lumps of calcium under the skin or in the muscles), vasculitic ulcers (holes in the skin or gastrointestinal tract), and in some severe cases it can even be fatal. And there is no cure, so we need to find one.
In 2016, our Cure JM Chicago Chapter started. We are a group of families in the Chicago area who have children battling Juvenile Myositis and are hosting a fun community walk event to help raise awareness and funds for Juvenile Myositis research.
Can you help us spread awareness? We will be hosting our second annual Walk Strong to Cure JM walk this year in Warrenville from 9 a.m. to noon Sunday, May 6, at St. James Farm Forest Preserve.
Walk Strong to Cure JM Chicago supports the national Cure JM Foundation's mission to find a cure for Juvenile Myositis.
We're getting closer to better treatments but there is still more work to do. Last year, we were able to fund research at 10 prestigious research institutions, helping to advance JM research at an unprecedented pace - including important JM research right here in Chicago at Lurie Children's Hospital!
We were very fortunate to find one of the leading doctors who studied this disease right here in Chicago at Lurie Children's Hospital. Jessica was immediately put on very strong medications and given infusions in order to calm her immune system down and prevent it from attacking her body. When you have a sick child, you realize how much you used to take for granted. Just the mundane tasks of everyday life. You get bitter and angry some days that others don't have to worry about these little things. You worry about your child every minute of every day. We had to make accommodations at the elementary school to meet her needs. She missed lots of school days for doctors appointments and weekly infusions. She couldn't just go outside for gym class or recess. She had to go to the nurse's office everyday to put on sunscreen, get a hat and sunglasses to protect her body. Her teachers had to clean the desks, chairs, and doorknobs everyday to limit her exposure to germs. Her body was changing from the steroids and she started to look like a different child. She had to make up homework from days off full of doctor appointments and long infusions that made her feel sick.
I am happy to announce that my daughter is now 15 and is doing much better. We have had some setbacks and struggles, but overall, she just wants to enjoy life as a normal teenage girl. She loves singing and musical theater. She takes her medication every day and is getting healthier. Unfortunately, there are many kids that are not as well off in our JM community.
Rare diseases do not get much press. National awareness of this terrible disease needs to grow. Many doctors are not familiar with Juvenile Myositis and therefore cannot diagnose it. JM children have a much better success fighting the disease if it is caught in it's early stages.
Please consider helping us spread awareness and raise funds so we can continue our fight and find a CURE!