A Mother-Son Partnership: Ken and Diane Frawley’s Journey with Organ Donation
Ken Frawley, son of Diane Frawley, is a 33-year-old heart transplant recipient who's an avid baseball player. Diane is a middle and high school teacher who shares her family's story with younger individuals, hoping to educate them about the importance of organ donation.
The Frawley Family's story begins in 1980 when Diane's cousin, David, woke up suddenly in the middle of the night and couldn't breathe. After taking him to the hospital, they discovered David had a heart problem, which soon took his life at 17 years old. Around the same time, David's brother, Jeff, began to have similar issues; afraid to lose him in the same way they did with David, the family moved to Stanford, California, to have him closer to specialists at Stanford Hospital. Six months after David's death, 19-year-old Jeff passed away. Jeff's cardiologist stated that the cause of death was not genetic, so the family was left wondering what truly happened to their loved ones.
Years later, Diane married Ken, her college sweetheart, and had two children, Ken, named after his father, and a daughter, Emily. In October 2014, during a seemingly routine softball game, Ken's life took an unexpected turn. He had a fatal arrhythmia, his heart racing uncontrollably as he lost consciousness. When Emily called their parents, Diane and Ken, with the news, Diane knew the cause had to be the same condition that took the lives of her cousins. After regaining consciousness, Ken initially wanted to continue his game because baseball was his passion. Ultimately, Ken was admitted to New York-Presbyterian Columbia University Irving Medical Center and underwent thorough testing. They found that he had a dilated heart with a damage level equivalent to that of a heart attack. The culprit: a genetic mutation of the X-linked DMD gene.
Ken was the first member of the family to receive this diagnosis; in the following years, most of Diane’s side of the family decided to undergo genetic screening. Many tested positive for the genetic mutation, which is one X gene that carries the defect. Because of this, most of the males in the family had the disease, while some of the others were carriers. Diane, Ken’s mother, is a carrier; she passed down her normal X gene to Emily, while Ken inherited the genetic mutation. For Diane, genetic screening finally provided definitive answers and allowed her and her family to receive insight that helped them evaluate their situation.
Ken received a defibrillator as part of his treatment; however, in 2016, a head cold weakened his heart even more than it could take, leading him to need a heart transplant. Ken was not a typical recipient – he was 26 years old at the time, decades younger than most recipients. For Ken to relate to another recipient, the hospital brought in a young man named Ryan who received a transplant in January 2008. Diane and Ken recall Ryan lifting his shirt to showcase the scar from his surgery, allowing them to see what a successful recovery would look like. On August 20th, 2016, Ken received a heart transplant at Newark Beth Israel Hospital.
Throughout recovery, Ken likened his heart issues to sports injuries, a mindset that helped him persevere through the challenges. He shared that, every day, he had the opportunity to improve or stay just as well. He was encouraged by milestones such as his first steady walk to being able to run again. Around this time, Ken remembered Ryan's candidness and the impact it had on Ken's outlook on his transplant; this experience inspired him to share his experiences with younger people about organ donation. Now, Ken advocates by speaking with younger individuals on the heart transplant list at New York Presbyterian Hospital and encouraging people to register for organ donation. To advocate further, Diane, a middle and high school teacher, harnesses her voice to educate high school sophomores about organ donation. With plans to expand her reach, she sits on the Transplant Support Organization (TSO) board as the organization's secretary, has trained with LiveOnNY, and works alongside the Organ Donation Awareness Corporation (ODAC).