With every movement, 16-year-old Nourah Al-Shammari of Kuwait, is breathing a little easier. While her physical therapy appears to be easy, Nourah’s early years weren’t always like this. As young child, her first memories were of how difficult it was for her to breathe deeply and do simple tasks.
Nourah: "My life, it was very, very hard to me. I have, like, most of the time, I have a short breath. I can't, like, I don't have the ability to walk or run or even to eat. And using the stairs, like, one of my dreams is of, like, having a life like a normal kid.”
Nourah’s journey began at Cincinnati Children’s when she was around 3 years old. Born in Kuwait, her parents searched the world to find someone to care for her rare genetic lung condition called hereditary pulmonary alveolar proteinosis or (PAP).
Dr. Robert Wood, now retired, started treating Nourah as her primary pulmonologist. Dr. Wood had implemented a treatment procedure years earlier called whole lung lavages. The invasive procedure is done with the patient under general anesthesia and requires several hours to complete. When Dr. Wood retired in 2020, Dr. Christopher Towe, director of the Rare Lung Diseases Program, took over as Nourah’s primary pulmonologist.
Dr. Christopher Towe: "So the lung makes surfactant and that surfactant is important for the mechanical properties of the lung and allow us to breathe easier and keep the lungs inflated. And enormous case her genetic defect prevents her lungs from properly recycling that surfactant."
But over the years Nourah's condition slowly worsened. A lung biopsy revealed a second abnormality that was causing Nourah's lungs to scar. In October 2020, Doctors admitted Nourah then aged 15 to the hospital to give her more oxygen support as her lungs were failing.
Dr. Don Hayes: "The disease she has is an indication for lung transplantation patients do well, after lung transplant. We moved her from the pediatric ICU to the cardiac ICU, and that's when she was cannulated for Extra Corporal Membrane Oxygenation or ECMO. She was doing physical therapy. She was actually up in the room up in the unit walking around. That's very uncommon, especially in pediatric institutions."
Like most teens, Nourah turned to social media to help her make the most of her situation.
Nourah: "I just was walking and I just said, Let's dance. Let's do a Tik Tok dance and be like, oh, all right. Let's do it."
On May 12 2021, Nora received a double lung transplant.
Dr. Towe: "But when I saw her awake, you know for the first time and ask her how she was feeling. She told me that you know, she was feeling good. And then she said here I want to show you something. And she took this big breath and blew it out. Like I've never done that before. So that was a great feeling watching her do that."
After several weeks of recovery, Nourah left the hospital with a great celebration.
Nourah: "Like, I feel love all around me and I, I feel like everyone loves me, like."
Dr. Towe: "Nourah's genetic condition. You know, she was the first identified patient with it. And so we have researchers here at Cincinnati Children's that have used Nourah to better understand this disease and are hoping one day to cure this disease because of her."
Dr. Hayes: "Nourah's future is bright, she's on a path of recovery. We hope that she goes to college, I think that's her plan, and the goal would be for her to tell her story forever and hopefully influence others that need this type of care regardless of the age."
Nourah: "I would say thank you for my mom and my dad. They were so patient, and strong, and they don't they never give up. Even in the hard time there was smiling. For Dr. Wood, and Dr. Towe, and Dr. Hayes, and all the transplant team and A-7 team, I love you so much and you're the best part of my life."