Are you ready to walk for a Cure in 2018? If you missed last year's walk, don't miss this year's walk. You all have been so supportive in Mikayla's fight against JDM, and we thank you so much. This is the 2nd Annual Walk for the Massachusetts Chapter and we want you to be there! So why do we do this??
Over the past 31 months, it feels like we have lived on a roller coaster. Our faith and hope have been challenged to the core. We've been presented with hopeful news, only to see it replaced a couple weeks later with discouraging news. We have received negative news, only to see our daughter fight through the pain with a smile until the next prognosis. We administered new drug after new drug, received new treatment after new treatment, and yet we live day to day to see if any of them will make a difference. All we want is for Mikayla to be healthy and happy, but the simple fact is medicine has not caught up to allow our JM Kids to achieve that way of life Yet!!
There are 52 weekends in a year. Since being diagnosed with JDM in 2015, Mikayla has spent over a year and a half of her weekends in the hospital. These treatments recharge her body so she can get through to the next treatment 3 to 4 weeks later. She has spent the last two Disney vacations in a wheelchair, including the last one in June where the sun and walking took a toll on her recovering body. However, these physical limitations are just half the story. There is an emotional side to this disease that we all must pay attention to. We need help raising awareness to the medical community and anyone impacted by this disease that we can not ignore the mental distress these kids go through while on these powerful medications.
Today, Mikayla is doing amazing and we are so excited and hopeful. Her strength and balance has returned to slightly above normal, however her internal batteries remain weak. She can perform most activities, but gets tired quickly and needs to rest. She is working very hard to get stronger and looks forward to playing sports in the Fall.
While Mikayla's path has been difficult, there are more and more kids starting down the same path as they are newly diagnosed with JDM. We need your help to make sure they get the right medication and treatments from the beginning and do not go through the trials and tribulations Mikayla and so many kids before her have experienced. We need your help to raise the money to improve education to the medical community, so they can improve the medications and treatments limiting the horrible side effects. We need help improving therapies so our kids are not robbed of their youth. If you can help us in any way, please donate any amount, we would greatly appreciate it.
See you there! Love, Mikayla, Chris, Michelle and Jackie