Maya’s Story

We, the Jordans, are running the 2026 TCS London Marathon to raise money for the Cystic Fibrosis Trust — to help fund vital research, raise awareness, and give our daughter, Maya, the best possible quality of life.

This is Maya’s story.

On Friday, 24th January 2025, our beautiful baby girl, Maya Bridy Jordan, decided to make her entrance into the world three weeks early. It was one of the best days of our lives — full of excitement, nerves, and the joy of finally meeting our baby and finding out if we were welcoming a little boy or girl. It was a day we’ll never forget.

Everything happened quickly. We arrived at the hospital at 10:30 a.m., and by 5:40 p.m., Maya was in our arms. We were so happy and couldn’t wait to get home and start our new life as a family of four. But within the first 48 hours of her life, our world was turned upside down.

At first, Maya fed well from both breast and bottle, but soon she began to refuse feeds and needed to be tube-fed to keep her nourished. By Sunday morning, 26th January, she still hadn’t passed her first stool. When doctors examined her, they noticed her tummy was hard and swollen. She was taken to the neonatal intensive care unit (NICU) at Singleton Hospital for an X-ray, which revealed a blockage in her intestine.

We were quickly told she needed to be transferred to the Children’s Hospital for Wales in Cardiff for further treatment — and possibly surgery.

At Cardiff’s NICU, further tests showed the blockage was in her small intestine, and surgery would likely be required to remove it. On Wednesday, 29th January, Maya underwent bowel surgery, where a 50cm blockage was removed. The operation went well, and a temporary stoma was created to help her recover.

After surgery, we were told Maya had Meconium Ileus — a condition in newborns where the first stool is thick and sticky, causing a blockage in the small intestine. This condition can be an early sign of Cystic Fibrosis (CF), so the consultants ordered genetic testing to confirm.

On 8th February 2025, we received the news that changed our lives forever: Maya had Cystic Fibrosis, a life-limiting genetic condition that causes sticky mucus to build up in the lungs and digestive system. It affects more than 11,000 people in the UK, and around 1 in 25 of us unknowingly carry the faulty gene.

Maya’s specific mutation, Delta F508, is one of the most common forms of CF, found in around 85% of cases in Europe. For her to have this condition, both of us unknowingly carried the gene — something we had no idea about.

Cystic Fibrosis affects many parts of the body, including the pancreas, meaning people with CF often need enzyme capsules (called Creon) with every meal to help digest food properly. Maya now takes these daily.

Thankfully, she also qualifies for groundbreaking treatment called Kaftrio — a combination therapy that helps treat the underlying cause of CF, rather than just the symptoms. It’s available to people aged two and older who have at least one F508del mutation. We feel incredibly lucky that Maya will be eligible for this life-changing medication when the time comes, though sadly, not everyone with CF can access it.

After her diagnosis, Maya recovered amazingly well from her first surgery. She slowly built up her feeds and started to thrive, even with all the challenges she faced. However, her stoma output remained high, which meant she wasn’t absorbing enough nutrients to gain weight. Before we could finally bring her home, the doctors decided to reverse the stoma to help her progress.

On 11th March 2025, Maya underwent her second surgery to reverse the stoma. Everything went smoothly, and after a long recovery and gradual increase in feeds, she was finally discharged on 24th March, after eight weeks in hospital. At two months old, we could finally bring our baby girl home and begin life as a family of four.

Over the following months, Maya blossomed. She gained weight, took her medication without any issues, hit her developmental milestones, and started weaning — loving every new food she tried. But at six months old, the unexpected happened again.

On 13th August 2025, Maya became unwell. She was vomiting, couldn’t keep food down, and her tummy was swollen and hard. At first, we thought she’d caught a stomach bug, but after an X-ray at Morriston Hospital, doctors discovered another blockage — this time caused by a build-up of mucus related to her CF.

The next day, we were blue-lighted to Noah’s Ark Children’s Hospital in Cardiff. Doctors hoped treatment could help her pass the blockage naturally, but within 24 hours, her condition deteriorated — she developed a high temperature, rapid heart rate, dehydration, and signs of infection, possibly sepsis. The team made the urgent decision to perform emergency surgery on 15th August. This was Maya’s third operation in her short life, and without it, the outcome could have been very different. This time the blockage was a total of 5cms.

The surgeons created another stoma to monitor her bowel movements, explaining that she would likely need it for up to a year while her intestines grew stronger. They also removed adhesions (scar tissue), which can form after multiple surgeries and cause further complications.

Maya’s recovery was remarkable once again. After four weeks in hospital, we returned home, though we still needed to closely monitor her stoma output. If it became too high, we had to perform a process called “recycling” — carefully reinserting stool back into her bowel through her mucus fistula to help her body absorb more nutrients and keep her digestive system functioning.

Unfortunately, just nine days later, Maya’s output spiked again, and she was readmitted to hospital. The medical team decided to perform a second stoma reversal, and on 22nd September, she underwent her fourth surgery. This time, her recovery was the best it had ever been, and within eight days, she was home.

Maya has endured more in her first nine months than most people do in a lifetime, yet she continues to smile, laugh, and light up our lives every single day. Her strength and spirit inspire us constantly.

Cystic Fibrosis is a serious, lifelong condition. It requires daily treatments, ongoing medical care, and constant monitoring. There is no cure — but with the right support, people with CF can live longer, fuller lives. We’re determined to do everything in our power to give Maya that future.

Neither of us are runners — in fact, we’ve never enjoyed running! But for Maya, we’re pushing ourselves beyond what we thought possible. We’re committed to completing the 2026 London Marathon not only to raise funds for the Cystic Fibrosis Trust, but also to raise awareness of this condition and support the vital research that brings us closer to effective treatments for everyone living with CF.

We want to say a heartfelt thank you to everyone who has helped Maya so far — the nurses, surgeons, consultants, CF specialist team, dietitian's, physios, and all the staff who cared for her in Cardiff, Swansea, and beyond. Without your expertise and compassion, our story could have been very different.

From the bottom of our hearts — thank you. And to everyone reading this, your support and donations mean the world to us. Every contribution, big or small, helps give Maya and others with CF the best chance at a bright and healthy future. 💛