VIVI’s story and why we need a cure...
Hard to believe it has been almost a year since we first noticed something was wrong. We were in the midst of quarantine and I’ll never forget watching her zest for everything she loved to do, just disappear. The sparkle left her eyes and she was no longer fluttering around the house as she typically did, begging to go outside and play 24/7. Instead, she would just sit and/or lay in one spot for extended periods of time. My first thought was, “wow quarantine has really done a number on her.” But then as we watched closely, we realized she could no longer do normal day to day tasks and seemed to be in agony when she tried. It became too painful for her to sit up on her own, get in and out of bed and could no longer do the stairs. Those were some very dark days not knowing what was happening. We had no clue every muscle in her little body was being attacked by her own immune system. It would take more than 6 weeks of pokes, procedures and dr visits to figure out why. So when we finally received the diagnosis, in a way it was bittersweet. On one hand, we were relieved to know the why, but on the other hand, we realized she had a rare, incurable, autoimmune illness that carried a life sentence. The new diagnosis itself was terrifying along with COVID. This is why, now more than ever, we need a cure and/or medication that does not compromise the immune system. JM is a vascular disease meaning the vascular system is under attack from an autoimmune response. Contracting COVID and other illnesses for kids like Vivi could potentially exacerbate their condition. The chemo injections and steroids taken for JM are also harmful since they hinder the body’s natural immune response from fighting other illnesses. Unfortunately, at this time, Viv has to continue with injections and IVIG infusion treatments to stay one step ahead of her illness. However, there are clinical trials starting for a newer steroid, Vamoralone, that does not have the side effects of other steroids like Viv has had to take. This is a huge game changer for children with JM. If trial is successful, this new medication could be used instead of traditional steroids to help the immune system. Better ways to treat this disease and a cure are the miracles we hope and pray for every day!
We are participating in the 2nd annual Walk Strong Across America.
We invite you to show your support by making a gift and walking with us on or before July 4th - from the comfort of your home, in your yard, or around your neighborhood.
Cure JM families, friends and supporters are coming together to raise $750,000 for Juvenile Myositis research. Reaching this important milestone will help ensure no promising research is left on the table in 2021.
Gifts will be matched by the Leetz Family Match. Every dollar makes a difference and gifts will be put straight to work to advance research for better treatments, better care, and, ultimately, a cure.
We are so grateful for your support.