Leah Musico wrote -
Emily was diagnosed in January of 2017, one week after her brother Jude was born - and after five weeks of hospital stays, procedures, and worry that her symptoms could be an indication of muscular dystrophy. When her JM diagnosis was finally confirmed, we all breathed a sigh of relief. Then it began to sink in that we are still dealing with a serious life-long disease.
At the time of her diagnosis, she was very weak and needed physical modifications to go up and down stairs, sit on the floor, and - at her weakest - to push herself up to hands and knees from lying on her belly. Now, a year into her treatment, her physical strength and flexibility are fully age-appropriate! She takes a daily dose of prednisone and weekly methotrexate, and receives physical therapy every other week. We are in the very slow process of weaning her of her medications to hopefully achieve remission.
Through the process of diagnosis, extreme weakness and difficuly with digestion, the heavy prednisone and days of a round face and belly, and weekly PT, Emily has stayed positive and happy. She is our light and inspiration, the best daughter and big sister anyone could hope for!
Thank you, friends, for any donation - large or small - that will help with the cost of research. Especially since JM is so rare, every dollar can make a big difference in finding better treatments for Emily's disease.
Also, this year, we are encouraging anyone who would like to walk with us to join us for the event itself! (Last year, we were still adjusting to the fact that this was our new reality.) Please consider joining us if you are free the morning of July 1!
Join us for our 2nd Annual "Walk Strong to Cure JM". It will be a fun family event for all ages. This event is free and open to the public. 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 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.
All are welcome!
Sunday, July 1, 2018
Key Bridge Marriott - 8:30 a.m.