BENEFITING: Cure JM Foundation
ORGANIZER: Cure JM Foundation
Please help us find a cure for Ella.
Ella is currently battling a very rare disease called Juvenile Dermatomyositis, or as we call it JDM. She was diagnosed a few months ago, on September 29, 2014 at 4 years of age. JDM is a rare autoimmune disease which attacks children of all ages it causes the body's own immune system to attack healthy cells and tissues, which cause pain, weakness, sometimes even inability to walk, disfigurement, and has led to death in some cases. JDM can affect virtually any system of the body, the heart, lungs, skin, muscles, and more.
This disease is very rare as it only affects between 2-3 children out of a million every year. Some children may experience a remission, while others will battle JDM their entire life. Ella has been receiving treatment since her diagnosis, and is generally responding well with minimal side effects so far. We believe that we caught the disease fairly early (luckily), and have started on the path to beating JDM. Her outlook is good – but there is no cure.
Ella’s treatment started with taking Prednisone (a Corticosteroid medication that helps to prevent the release of substances in the body that cause inflammation), it also suppresses the immune system – and she will be on this for many more months. Shortly after starting the Prednisone she started taking methotrexate (a chemotherapy drug that also suppresses the immune system), we give her weekly injections of this at home now. 3 weeks ago we started IVIG treatment, which lasts about 7-8 hours, administered in the Children’s Hospital by IV here in Calgary, once a month we need to go in for this.
We have decided to take part in fundraising that supports helping to find a cure specifically for this disease, and we are now part of Cure JM's team for the CrowdRise Holiday Challenge. The charity that raises the most money for their particular cause by January 6th at 2:00PM eastern will win $100,000 for their particular cause.
Thank you so much for taking the time to read this, and I hope you can donate to a cause that is very near and dear to our family.
Generosity like yours has helped Cure JM Foundation invest more than $8 million into critical research, advancing our understanding of the genetic and environmental risk factors of Juvenile Myositis, the most effective drug treatments, and common factors of life-threatening heart and lung complications
Please help us find a cure for Ella. With your help we can, and will, find a cure.