My name is Leigh, and I am a proud advocate for Cystic Fibrosis Ireland. Cystic Fibrosis (CF) is a genetic condition that mainly affects the lungs, pancreas, and digestive system. People with CF produce thick, sticky mucus that clogs the lungs, leads to serious infections, and blocks the pancreas, making it difficult to absorb nutrients.
I was just eight weeks old when my mother knew something wasn’t right. I wasn’t gaining weight—I weighed only 7 pounds, 2 ounces—had countless nappy changes, and developed double pneumonia. Doctors initially believed my poor mum was underfeeding me or that I had a dairy intolerance. For a first-time mother, it was an incredibly frightening and emotional period. After several tests, including a sweat test, I was officially diagnosed with Delta F508, the most common CF gene. Once I started the correct medication, my weight quickly increased to 9 pounds, 2 ounces, and things finally began to make sense.
Between the ages of five and seven, hospital admissions became more frequent. Chest infections, lung collapse, and failure to gain weight were constant battles. Even though I loved food, my body needed extra help. Doctors decided to insert a PEG feeding tube into my tummy so I could receive extra calories and supplements overnight. As the years passed, my veins struggled with repeated IV antibiotics, leading to the insertion of a portacath. It made treatment far easier and spared my tiny veins—something I was extremely grateful for.
By my teenage years, hospital stays became a regular part of life, often every four to six weeks, lasting two to three weeks at a time. If I was strong enough, I could continue IV antibiotics and physio at home. I always brought my own pillow and blankets to make the hospital feel a little more like home. Being constantly unwell was isolating. Weeks spent in an isolation room were mentally and physically exhausting, with too much time to think. I tried to stay busy by reading, sketching, doing schoolwork, and experimenting with makeup. With my immune system so weak, visitors had to be limited. My small circle—two close friends, my boyfriend, and my family—was often my only link to the outside world.
Between the ages of 16 and 19, my health declined rapidly. I became dependent on oxygen 24 hours a day and was diagnosed with CF-related diabetes. My days were consumed by airway clearance, nebulizers, checking blood sugars, exercise, and constant fatigue. Even simple tasks like showering left me breathless. Coughing up blood was terrifying, and the stares I received while carrying an oxygen tank were difficult to endure. I was exhausted—physically, emotionally, and mentally—and I had reached my limit.
The decision about a lung transplant was clear: I needed one, and soon. After extensive testing to determine my eligibility, I was officially placed on the active waiting list for a double lung transplant in the summer of 2015. It was an incredibly worrying time for my family, but I also felt hopeful. I was ready for my next chapter. All we could do now was wait.
In October 2015, on a dull Saturday morning, I was sitting with my BIPAP mask on, watching Keeping Up with the Kardashians, when the life-changing call came. My emotions went into overdrive. Once I accepted the offer, everything moved at lightning speed. An ambulance arrived, and despite living 40 minutes away, we reached the hospital in just 20 minutes. After final tests, the next morning I received the greatest gift of all—two bright pink new lungs. My life changed instantly. No more oxygen tanks, fewer hospital admissions, and the simple joy of breathing freely. Life felt amazing.
My surgery was groundbreaking—the first of its kind in Ireland. My incredible cardiothoracic surgeon, Professor Karen Redmond, used Ex Vivo Lung Perfusion (EVLP), a technique that allows donor lungs once deemed unsuitable to be reconditioned outside the body. My right lung was treated this way before transplant, improving its quality and making the surgery possible.
Recovery was both challenging and incredible. I had to relearn how to breathe, eat, and walk. Just three days after surgery, with the help of my mother and sister, I took my first steps around the ICU. It was an unforgettable moment. Exercise became key to my recovery, and I was discharged after just two weeks in hospital.
For the first few months, I attended frequent follow-up appointments, with regular blood tests to monitor infections and adjust immunosuppressant medication. Over time, visits became less frequent. Today, I see my team every four to six months, with routine CT scans, X-rays, and blood tests to stay on top of my health.
In February, media outlets began covering my surgery, which was daunting as I had never been in the public eye before. Still, it gave me the chance to share my story and raise awareness for CF and organ donation. With National Cystic Fibrosis and Organ Donation Months following soon after, the timing felt meant to be.
Not long after, I had the incredible honor of meeting the President of Ireland, Michael D. Higgins, at Áras an Uachtaráin, alongside my mother, fellow transplant recipients, and the organ donation team. It was a truly special day.
Just six months post-transplant, I walked—and even ran—the annual Remembrance 10km Walk/Run in memory of those lost to CF. In previous years, I could only cheer from the sidelines. Being able to take part was emotional and empowering, especially surrounded by friends, family, and a community full of heart and support.
Today, I am a fully certified makeup artist and am studying Pharmaceutical Science and Technology. I’m excited to see where life takes me next. After years of being cared for by my amazing mother, I’m preparing to move out and begin a new chapter with my partner, Craig. I will forever be grateful to my donor family for this precious second chance at life—they are always in my thoughts and prayers.
My name is Leigh, and this is my story.
A true warrior isn’t immune to fear—she fights in spite of it.
