BENEFITING: Cure JM Foundation
EVENT DATE: Nov 11, 2017
In November of 2016, Kynlee was diagnosed with a very rare disease called Juvenile Dermatomyositis. JDM is a form of Juvenile Myositis. Its where the body's own immune system attacks it's healthy cells. This life threatening disease can affect any of the body systems from the skin to the heart. There is no cure. She was 6 years old when she was diagnosed. It all started with a day at the water park. She has always been my little water baby and loves the sun as much as her momma. This particular day she developed what look liked a sun burn on her face. It never went away. After seeing her pediatrician and then a dermatologist, we were referred to a pediatric rheumatologist. By this time the rash had spread all over her body and she began to fatigue easily. I knew something was wrong because she wasn't her normal self. The first time we saw her rheumatologist, he knew exactly what she had. They usually can't diagnose it that quick but Kynlee's rash was so prominent on her hands that he said it was one of the most classic cases he had seen. The doctor told me that my daughter had an incurable disease known as Juvenile Dermatomyositis. This was the day our lives were forever changed. I don't mean to be dramatic but it really was. Her life changed because she could no longer enjoy many of the things she had loved to do before without major modifications and challenges and her new normal had become rashes, stomach cramps, leg pain, headaches, pills, creams, needles, test, x-rays, and doctors appointments. My life changed because I became the mother of a "sick" child and every second of every minute of my day is spent trying to find ways to help her feel better and live a normal life. The treatment she began included lots of strong medications. Medications that adults who I know stopped taking because of the nasty side effects, but Kynlee has fought through bad headaches and horrible stomach pain to get better. As of right now, her medications have helped to improve her rash but they didn't get rid of it and she is has some muscle weakness, muscle tightness, and joint stiffness. We are going to Children's Mercy Hosptial in Kansas City, MO in August to have more test done which will help us to know if other body systems are being affected as of right now and more treatment options. Although this disease is very resistant to treatment and the symptoms change from one day to the next, our goal and PRAYER for right now is for Kynlee to hear the words... You are in REMISSION! We need a cure. She needs a cure! Help us help those that are researching and working so hard to find a cure for JM kids! Come walk with us or Donate in Kynlee's name! Thank you from the bottom of our hearts, Kendall & Justin ❤️ Join us for the Inaugural Walk Strong to Cure JM – Dallas/Fort Worth WHEN: Saturday November 11, 2017 WHERE: River Legacy Park 701 N.W. Green Oaks Blvd., Arlington, TX 76006 9AM - check-in and events begin (same day registration available) 10AM - Noon- Walk and festivities Register at www.crowdrise.com/walkstrongdallas Contact Walk Chair Jennifer Howard at firstname.lastname@example.org or 443-717-4152 for more information. ****************** All proceeds benefit Cure JM Foundation, a non-profit dedicated to finding a cure for Juvenile Myositis, a life-threatening disease which causes the body’s own immune system to attack healthy cells and tissues. It can cause pain, weakness, inability to walk and disfigurement. It can affect virtually any system of the body, the heart, lungs, skin, muscles, and more. And there is no cure....YET! But with support from friends and family like you, we’re getting closer to better treatments and a cure. Last year, we were able to fund research at 10 prestigious research institutions, helping to advance JM research at an unprecedented pace! Your support now will keep that momentum going.