Margaret’s Story was submitted by Donna Chun, which successfully won Margaret the prestigious H. Clifford Lee Lifetime Achievement Award at the Association of Fundraising Professionals on National Philanthropy Day.
To understand the magnitude of what Margaret Guedes, CEO and Founder of Kids Beating Cancer, has accomplished over the last 26 years, you must first go back and understand the years of sadness and pain that shaped her future journey of passion, leadership and philanthropy. While serving over 7,000 of the sickest children in Central Florida and their families and beyond, she has raised over 10 million dollars, added over 37,000 new potential marrow donors to the national registry, and finally, after years of tenacious advocacy, Margaret’s ultimate goal — bringing the first and only pediatric marrow transplant center to Central Florida — is a reality.
There is no greater motivating factor to inspire and lead others to join her cause and change the world, than the suffering and death of a child. Turning personal tragedy and adversity into triumph has been the core that has driven Margaret to overcome years of barriers, ultimately leading the Central Florida medical community to this point. With the opening of the Kids Beating Cancer Pediatric Marrow Transplant Center, Central Florida has now become a place of healing for today’s children and their families as well as future generations of children diagnosed with leukemia, cancer and 80 other malignant and non-malignant life-threatening diseases.
Today, hundreds of families will no longer have to leave this community to be treated for their diseases. In the past, having to leave the community for bone marrow transplantation has sadly resulted in the destruction of the family unit, marital stress (even divorce), lifelong challenges for the siblings, insurmountable financial debt, and even the loss of the ability and spirit to achieve future recovery, even while the disease process may be receiving successful treatment. The magnitude of sending these families out of town and out of state to distant hospitals for months and years to receive treatment, the only hope for a cure for their child, forces families through a journey that is complex and overwhelming. Unless one is faced with their trials, it is almost impossible to grasp the magnitude of emotional, financial and physical challenges and devastation that occurs. Margaret’s passion has been to bring these life-saving treatments to Central Florida families and children, so life-saving cures can be accomplished at home with family, friends and the community close at hand.
Margaret’s story began in 1988, while she was pregnant with her third out of four children, when she had to leave Central Florida to obtain a diagnosis for her first-born son, John, at the young age of five. John’s disease was a rare and highly fatal Myelodysplastic Syndrome (MDS) that had evolved into acute myeloblastic leukemia (AML). With this aggressive disease, Margaret was told her son had only a 15 percent chance of survival. This increased only to 30 percent with a bone marrow transplant, if a marrow donor could be identified. Finding a donor was the first of many challenges Margaret faced.
Families today continue to experience tremendous barriers to treatment, finding a compatible donor in the family only 20 percent of the time. Margaret was fortunate, her second child, Todd, at the age of 4, was John’s perfect match. However, 24 years ago, not only could John not be diagnosed in Central Florida, but he also would have to leave the state to receive a bone marrow transplant. Due to John’s age and his disease, at that time, Margaret had to travel to Seattle with her two boys and her newborn daughter. The family had to be separated by this long distance for months, while Margaret had to face life and death decisions alone, and a high crisis and complex life, balancing the needs of a desperately ill child against the needs of the child who was the donor and a newborn baby, all far away from home and family for 100 plus days in Seattle.
It was this first transplant and the unbelievable difficulties that ensued because of the separation from family and friends that motivated Margaret to vow that she would devote her life to changing Orlando and Central Florida, so that families would never have to go through the trauma she had just experienced. Unfortunately, that ambition was put on hold when John relapsed within a few months, requiring a second transplant. At that time, he was just the fourth patient in the country to receive a second transplant for AML. With no choice at this point, it was a return to Seattle for at least another 100 days, if he survived. It was during these transplants, particularly the second one, that Margaret found the inspiration and determination that has resulted in her remarkable quest to make it possible for families who need a bone marrow transplant for their child, as their only hope for survival, to have this most difficult of treatments close to home, friends and family — right here in Central Florida.
The accomplishments of Kids Beating Cancer did not come easily, and had Margaret not been driven by her will to achieve what was not available for her son, and her passionate ability to inspire and motivate others to join her fight for her vision, most individuals would have quit early on. The sacrifices were deep for Margaret and her family. To start a nonprofit from nothing, only months after her son’s death, with no financial investors and little knowledge of the challenges to start and sustain a sound nonprofit with attainable objectives, was both altruistic and heroic. The results have benefited the Central Florida community, Florida, the US and beyond and will continue to do so for the years to come.