Gratitude Stories – Isabel
When the Rarest Diagnosis Meets Relentless Care
When Erin Harnedy’s youngest daughter Isabel was just a few weeks old, she began spitting up blood. Erin and her husband rushed Isabel to the Emergency Department at Hasbro Children’s, where she was admitted and closely monitored in the Oncology and Hematology inpatient pod.
“She kept getting sicker,” Erin recalls. “But we knew she was safe. Someone was always watching her.”
In the second week of Isabel’s hospitalization, the care team delivered a diagnosis neither parent had ever heard before: Multifocal lymphangioendotheliomatosis with thrombocytopenia, or MLT. It is an extremely rare vascular condition in which clusters of abnormal blood vessels can form throughout the body, trapping platelets and leading to dangerous bleeding.
When Erin searched for information, the rarity was staggering. At the time, only a handful of cases had ever been studied together. Isabel was believed to be only about the twenty fifth documented case worldwide.
The months that followed were intense. Isabel needed a PICC line, then a central line. She underwent blood work several times a week; frequent scans; blood and platelet transfusions; and weekend admissions that became routine. Teams across Hasbro Children’s worked together to manage a condition most clinicians will never encounter, including specialists in hematology, dermatology, cardiology, neurology, and gastroenterology.
On Isabel’s first birthday, her central line was removed. For the first time, things steadied. Erin and her husband allowed themselves to exhale. Their family returned to birthday parties, ordinary weekends, and the simple joy of watching their daughters play.
Then, nearly two years later, everything changed.
What began as mild congestion turned into acute respiratory distress. Within hours, Isabel was intubated. That night, she was placed on an oscillator, a powerful ventilator used when standard support is no longer enough. When her oxygen levels continued to drop, doctors spoke with Erin about the next step. ECMO, the highest level of life support.
For six days, Isabel remained on ECMO in the PICU. Specially trained respiratory therapists stayed at her bedside around the clock. Nurses, doctors, and social workers cared for Isabel and for her parents, noticing when Erin needed support, bringing therapy dogs, and wrapping the family in small gestures of comfort. Photos of Isabel hung in her room so every caregiver could see the spirited child beyond the machines.
Today, Isabel is eight years old and thriving. She is in third grade, devours books, and loves to dance and swim. She has been asymptomatic for more than six years and visits Hasbro Children’s just twice a year for check-ins.
“I am so grateful,” Erin says, “At Hasbro Children’s, when a child needs complex care, families can get it close to home with teams who not only care for the child, but who also care for the people who love that child.”