Susan Kass, Los Angeles Walk Committee

On my daughter Emily Matilda's 9th birthday, June 12, 2004, we attended her gymnastics team award gala where the approximately 300 people attending all sang happy birthday to her. Two days later my smart,funny, beautiful, kind and very athletic daughter had a routine physical (that included a blood test) in order to have her girl scout summer camp form signed. That next day I received the nightmare phone call that changed our lives. Within a couple of weeks it was confirmed that Emily had MDS. My '9 year old' had MDS; MDS, a disease that is considered a geriatric disease had somehow come into our lives.

Not too much changed for awhile....Emily was supposed to be more careful during sports, stay away from ill people and occasionally have blood transfusions. It turned out, however, that Emily had an aggressive form of MDS. Various doctors/experts around the country were consulted and it was decided Emily's best chance was to have a bone marrow transplant. February 5, 2005, less than eight months after diagnosis, Emily and I checked into the pediatric hematology/ oncology ward at UCLA for a bone marrow transplant. Emily had many complications during the over two months we lived there, but always kept her sense of humor and a positive attitude. During this time, on several occasions I actually heard myself saying, "Thanks God it's only 104.6". As a parent, it is not something you ever imagine.

We left the hospital after our long stay hopeful, but it was short lived as we  hit the 405 commuting back and forth for various other 'complications' and problems  until it was determined that  due to the cocktail of chemotherapy drugs given to Emily before her bone marrow transplant, she had developed the very rare side effect of bronchialitis oblitterans (a progressive lung disease, which essentially means the chemo destroyed her lungs). We started trying for a lung transplant, however the predisone she was taking post BMT that also helped keep her lungs clear, had, again as a rare side effect, been destroying her bones making her unable to have a lung transplant. By December 2005 my athletic daughter was in pain and bedridden. Emily Matilda left home in an ambulance for the last time on January 16th 2006. We lost her March 9th.

I am on the Los Angeles Hope Steps and a Cure walk committee because no child, no family, no Mother, should ever have to endure the pain that MDS has pushed into our lives. As evidenced by the Emily Matilda Kass Research Grant awarded in 2010, we support the AAMDS foundation for the work they do through education and research helping people and their families touched by these diseases.