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, Emily 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, over 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.
Remission is possible and it would be a wonderful thing to get there. Some kids do, and don't have a flare of the disease again. Others achieve remission and have several relapses over their lifetimes, and still others manage active disease throughout their lives. We don't know what the future holds, but have learned through this experience and other life events (including our recent house fire), to appreciate all that we have - and to take life one day at a time.
Through the process of diagnosis, extreme weakness and difficuly with digestion, the heavy prednisone and days of a round face and belly, Emily has stayed positive and happy. UV rays from the sun sun can cause disease flare, so sunscreen, hats, and UV protective clothing is a part of our lifestyle. She loves her physical therapist, Ms. Laura, and is proud of her accomplishments there. She's a really cool kid and takes it all in stride. We are pretty proud parents.
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. The drugs she is on are strong, and long-term side effects can be taxing on a body - especially such a little body - so better treatments are necessary. Thanks to fundraising through Cure JM, there is more research being done recently and with promising results.
Also, this year, we would love to have a team of friends and family to join us for the walk! Please consider joining us if you are free the morning of July 1! Just let us know if you plan to be there. Details are below:
Sunday, July 1, 2018
Key Bridge Marriott - 8:30 a.m.
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.
Visit http://www.curejm.org for more information about the Cure JM Foundation.