More Than A Nosebleed: In Loving Memory of Harper

Turning two-years old comes with many changes— from growth spurts to a surging vocabulary. But as her little Harper grew, Rebecca Newman noticed a concerning development: blue fingertips and lips. Immediately, Rebecca knew she had to seek medical care.

Once referred to the New Orleans hospital PICU for testing in October of 2021, a cardiologist performed a bubble study on Harper’s heart. It was positive, a sign of pulmonary AVMs.  Genetic testing would later reveal Harper had a ACVRL1 gene mutation, otherwise known as HHT type 2. While the vast major of HHT patients inherit the disease from a family member, Harper’s case was an extremely rare de novo mutation – meaning neither of her parents have HHT.

To seek further assistance, the family was referred to an HHT Center of Excellence. Once there, the family was told embolization wasn’t a possibility due to the risk of ruptures. A double-lung transplant would eventually be needed, they were told. They were also informed Harper had a brain AVM which would have to be watched carefully.

Rebecca and Harper’s father, David Ryals, took Harper home on supplemental oxygen and watched her closely over the next two years as she explored the world—swimming, playing, and laughing like most other children her age. But in 2024, during Harper’s Make-a-Wish vacation, Harper caught a virus that started attacking her lungs, forcing her to be airlifted to Houston for care at Texas Children’s Hospital.

On April 2, Harper was listed for a double-lung transplant. She waited 74 days with a pulse oximeter rate in the 60s and physical activity score in the 30s, before she matched with a new set of lungs.

After the transplant, Harper was discharged from the hospital, but a cold brought her back in and it started to progress. Eventually, the infection caused her body to start attacking her new lungs. She was eventually sedated on a ventilator, but began improving enough to get a tracheotomy and start breathing without ventilation.

Tragically, Harper’s condition declined rapidly after the surgery and she did not pull through.

While cut far too short, Harper’s life had resounding impact. Harper and her family made the meaningful decision to donate her lungs to the newly-launched Cure HHT biobank  — a program which gives researchers around the world such badly needed HHT tissue, which is critical to helping advance science. Additionally, Harper’s story was featured on TODAY, which brought so much awareness to HHT.

Our hearts break for Harper’s family, and further fuels our motivation to work each and every day to end the suffering from this terrible disease. Consider a gift to support that work.