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When her daughter desperately needed a lung transplant to survive, Janet Murnaghan rallied against the outdated restrictions in healthcare that would limit her daughter's options.
Sarah had been dying of cystic fibrosis since the day she was born. The disease quickly ravaged her lungs and little body bit-by-bit. Fragile and frail, she had only weeks to live, when her mom realized the reality of Sarah’s situation: transplant laws, restricting access to lungs based on arbitrary age restrictions, meant Sarah’s options were limited. The injustice of her daughter’s fate spurred Janet to start a public battle against outdated health care regulations and a battle to save Sarah’s life.
Janet transformed her pain and desperation into a voice for Sarah and other kids using social media to broadcast the unfairness, which was robbing Sarah of her right to life with the help of friends and family who emerged as Sarah’s army. How does a family navigate catastrophic illness and life in a hospital, while still maintaining a sense of normalcy? Saving Sarah is a story of hope and courage, and a mother’s determination to never give up. It's also the story of how a family—Janet and her husband Fran have four other children—reacts and adjusts when one of its members is in ongoing crisis.
“I need to fight, and I cannot fight and fall apart at the same time. Each single moment is all that matters.” —from Saving Sarah
Murnaghan, a former television producer, shares the suspenseful story of her 10-year-old daughter's 2013 fight for life. Born with cystic fibrosis, Sarah had been on the waiting list for a lung transplant for 18 months when her parents learned that an arbitrary age cutoff of 12 prohibited Sarah from obtaining adult donor lungs that could be resized to fit a child (the rule by the Organ Procurement and Transplantation Network has since been revised). With their daughter days from dying in Children's Hospital of Philadelphia, the Murnaghans launched a media blitz and filed a lawsuit that resulted in a dramatic 11th-hour court decision to place Sarah on the list for adult lungs. With three other children at home cared for by relatives, the Murnaghans maintained a round-the-clock vigil at Sarah's side. Due to a deadly graft dysfunction,the first set of lungs failed, and Sarah was placed on a temporary heart-lung bypass machine until a few days later when another set of lungs became available and a successful transplant was made. The author's straightforward yet heartfelt prose includes short entries by her husband, sisters, and even Sarah. Readers will be deeply moved by this harrowing story and this family's fortitude, anguish, and love.