Pharma CEO Faces Personal Fight for a New Breed of Organ Donors

“A doctor at Children’s National Medical Center in Washington, D.C., had just told Rothblatt and her wife, Bina, that the couple’s youngest daughter, 9-year-old Jenesis, had a rare medical condition that likely gave her three years to live. The arteries between Jenesis’s heart and lungs had narrowed, choking off oxygen and placing an unsustainable burden on her heart as it struggled to send blood through her thinning blood vessels, like trying to push water through a hose with a kink in it. The condition, known as pulmonary arterial hypertension, was progressive, and there were no approved treatments, short of a lung transplant—almost unheard-of in children.”

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