Fundraiser starts now for Giving Tuesday
November 28, 2016
BENEFITING: Loeys-Dietz Syndrome Foundation
After a 30-year battle with Loeys-Dietz, Mary Harris finally succumbed to its effects on Oct. 1, 2016 at the age of 47. Her bright beacon of light always encompassed an attitude of gratitude and positivity despite the enormous challenges that lay before her due to Loeys-Dietz Syndrome. Mary Little Louse Harris (Franklin) came into this world the way she left it: as a warrior. She was 11th of 12 children and had come to know what later became known as Loeys-Dietz Syndrome through the sudden passing of 3 older brothers, Jimmy at age 18 in (1974), Bobby at age 14 in (1976), and David at age 24 in (1984). Shortly thereafter, Mary came to know the disease on her own terms when at age 17 she underwent her first of what would eventually become five open heart surgeries over a 30-year period. She became the first of several in her family to survive a thoracic aortic aneurysm. After a research study in the late 1970s, our family joined a new research study in the late 1990s and in 2005 a mutation in TGFbR2 gene was discovered in affected family members. From this, a name was finally given to the disease: Loeys-Dietz Syndrome. This gave us all hope for new understanding and help for those affected by the previously unnamed disease. Yet despite the family tragedies, nothing would detour Mary from living a life of happiness and gratitude. She made a conscious effort to “live happy” and that she did. She married her high school sweetheart upon graduating from college, began a successful career as a human resource director for a local therapy business, adopted a beautiful baby girl, then had the courage to reinvent herself at the age of 40 by returning to school where she received a Master’s Degree in Nursing from the University of San Diego. She never allowed LDS to crush her spirit. Each time it wreaked havoc, she would counter it with inspiring courage and fortitude. After working for a short time in her dream profession, her doctors suggested she retire and prepare for a shortened lifespan. Where that would crush even the heartiest of spirits, it drove her to yet again reinvent herself one final time. Her last year was spent as a mind and body entrepreneur for Nerium products, and her final weeks were spent traveling and enjoying time with close friends and family. Since our family’s second death in 1976, we have participated in studies trying to further understand these catastrophic events. Mary continued working with doctors to further understand and manage her disease. She also was highlighted by the medical community as an inspirational patient who lived with joy despite chronic medical challenges and served as a guest speaker at the Go Red for Women, an event that honored inspiring heart patients to take care of themselves and live happily. Even though we no longer have her physical presence with us, her legacy of gratitude and “live happy” will live on within each of us who were lucky enough to have been touched by her life. Please consider a contribution to aid in the understanding and management of this disease for those afflicted with LDS (including many surviving members of Mary’s family (2 siblings, 3 nephews, 1 cousin) and all those with connective tissue and aortic aneurysm disease. The Loeys-Dietz Syndrome Foundation (LDSF) is a 501(c)3 non-profit organization that supports the educational and research needs of the community, dedicated to: · encouraging education about Loeys-Dietz syndrome and related connective tissue disorders to medical professionals and lay communities to aid in identification, diagnosis, and treatment of Loeys-Dietz syndrome · fostering research about Loeys-Dietz syndrome · providing a support network for individuals, parents, and families affected by Loeys-Dietz syndrome.