This year I am running the Chicago marathon for a wonderful cause, the United Mitochondrial Disease Foundation. That name probably means nothing to you as it isn't something that you have heard of. I was the same way until I met a young man that was in my son's sub scout den and he introduced me to his family. His sister Chloe has Leighs disease, this disease has impacted their life in such a profound way that most of us could hardly imagine. Confined to a wheel chair, 24-hour care needed, in and out of hospitals her entire life, and more.... most of us would crumble under those pressures but the Fields family stands strong and continues to provide the love and care that Chloe needs. Please think about donated to this cause it is the least we can do.
This is a message from her father:
THE REASON THIS MATTERS AND WHY WE RAISE FUNDS FOR THIS CAUSE:Chloe has a mitochondrial disorder called Leighs Disease. It's a rare genetic neurometabolic disorder characterized by necrotizing lesions on the brain, particularly in the basal ganglia and brainstem. There is no cure and "treatments" are experimental and only partially effective in terms of improving quality of life. The prognosis is poor and, depending on the defect, individuals with this disease typically live only a few years. Chloe will be ten years old this October 24th and we never thought we'd utter those words or see her achieve this milestone! We strongly believe that she's alive and living a life of hope due to the information and resources we've accessed through UMDF. While she's certainly not "cured" and ever day with her is a cherished gift, we know that there's hope and UMDF is doing all the right things to provide support, education, and research for the mito community. We are so close to discovering effective treatments and maybe even a cure but the need is great and there's much more that can be done with appropriate funding. Well wishes and good intentions will not get us there - it's going to take money and UMDF is the right organization to use it effectively. Please help us pay it forward and invest in solutions that will make a difference for all the "Chloe's" of the world who desperately need and deserve a chance to thrive in life.
UNITED MITOCHONDRIAL DISEASE FOUNDATION INC wrote:
Running the Bank of America Chicago Marathon is the pinnacle of achievement for elite athletes and everyday runners alike. On race day, runners from all 50 states and more than 100 countries will set out to accomplish a personal dream by reaching the finish line in Grant Park. The UMDF's Team Hope Energy Life has participated in the marathon for the past 8 years as a charity partner, and we are excited for our 9th year as a partner with this world-class event.