Our happy little girl developed a stubborn cough before our lives changed forever

Anyone meeting three-year-old Lily Brettle-Jones would see a happy, energetic little girl who loves being outdoors. Described by her mum Amy Barrett and dad Ryan Brettle-Jones as "bubbly" and full of life, there had never seemed to be anything out of the ordinary about Lily's health. In fact, apart from the usual childhood illnesses, the little girl from Neath had always been healthy. Then she developed a stubborn cough - and everything changed. Now her parents are speaking out in the hope of raising awareness of her condition, and essentially helping other families. Looking back now, Amy says there were subtle signs that something was wrong. "Lily has always been independent. She used to walk everywhere, but then all of a sudden that just changed," she shared. "She didn't want to walk anymore and constantly wanted to be picked up. We thought maybe it was just a phase, but looking back, that was probably the first sign something wasn't right." Things took a turn in March 2026, after Lily caught a cold and developed a cough that wouldn't go away; prompting Amy and Ryan to take her to the GP. "We went back and forth to the GP over three weeks," Amy said. "At the first appointment they thought it was asthma, but it just wasn't getting any better. A week later, we took her back again and then they said it was tonsillitis and a chest infection." Still, Amy and Ryan felt there was something more going on. "She wasn't really drinking properly or anything like that," Amy recalled. "But we started to get really worried when parts of her body began to go puffy... her face, feet and arms. The puffiness had happened a few months before, but doctors thought it was some sort of allergic reaction," Amy said. Concerned by the flare up, Amy and Ryan took their daughter to the GP for the third time. "We went in and I remember the doctor saying, 'Something in the back of my mind is telling me this could be something to do with her kidneys.' "He asked us to bring in a urine sample, but every time we tried, she either couldn't go or would do a number two instead. When we couldn't get one to him, he told us that if we noticed any further changes or felt she wasn’t right, we should take her straight to A&E." Just one day later (Saturday, March 28), with Lily showing no signs of improving, she was rushed to A&E at Morriston Hospital. "They put her straight onto a ward in the high dependency unit and tested her urine to find extremely high levels of protein," Amy said. "That's when they realised something serious was happening with her kidneys - all her levels came back sky high. "It was terrifying. She needed nebulisers because her levels were so high that anything could have happened to her." "It was a very difficult time seeing our beautiful daughter going through procedures that even adults shouldn’t be going through let alone a little two year old girl," Ryan said. "I will never forget holding Lily so tight while the doctors and nurses were inserting needles and the catheter into her. She kept saying in her drowsy voice 'please daddy tell them to stop'. I thought at the time nothing can be worse than this but how wrong could I be?" By the following day, Lily was considered stable enough to be transferred by the WATCh [Wales and West Acute Transport for Children Service] team to the paediatric critical care unit at Noah's Ark Children's Hospital. Amy travelled with Lily in the ambulance while Ryan followed by car. However, within an hour of arriving, Lily suddenly deteriorated. "While I was holding Lily, I knew she was very unwell," Ryan recalled. "It was hard to keep her awake and when she was awake she said, 'Lily really not well.' After that she took a turn for the worse and went blue." "You could see she was struggling to breathe," Amy added. The crash team were called and Lily was sedated and placed on a ventilator to save her life. "It was really frightening," Amy said. "All four nurses were there holding an oxygen mask over her face and she was trying to bite them - that was her way of trying to say, 'Help me.'" "My heart broke into a million pieces at that moment," Ryan said. "But thanks to the fast response from the nurses and doctors, she’s still here with us today.” Still in shock at how quickly everything had changed, Amy and Ryan were told their daughter was battling three viruses at once: COVID-19 , parainfluenza and rhinovirus. "The swelling all over her body was fluid build-up,” Amy explained. "Her heart had become enlarged because of the amount of fluid and there was fluid on her lungs as well." Alongside this, doctors carried out genetic testing for an underlying kidney disorder they suspected Lily may have. She was indeed positive for the WT1 gene mutation. This gene can lead to a wide range of conditions, including childhood kidney and urogenital cancers as well as severe progressive kidney and reproductive disorders. "We got tested as well and neither me nor Ryan carry the gene," Amy said. "From what we understand, it's something Lily was born with, but it only developed about a year ago." As a result, Lily would need to begin dialysis - a life-sustaining treatment that performs the kidneys’ natural filtering functions - and be placed on the kidney transplant list. "It felt like we were going to lose her," her parents said. "We genuinely thought she was going to die." Stay informed on everything Neath Port Talbot by signing up to our newsletter here Two days later, while still on the ventilator, Lily underwent surgery to have a Hickman line inserted. Four days after that, she was well enough to come off the ventilator and was transferred to Pelican ward to begin dialysis. "Those six days were really weird... frightening," Amy said. "Obviously there was no talking from her; no giggling; no calling our names. As a parent it was hard to see." "Every time I was at Lily's side I would look at her and recall all the fantastic memories we had together," Ryan said. "Especially when she would say ‘Ryan... Daddy I love you' while grabbing my face and giving me a kiss." Fortunately, Lily soon woke up - but it was a completely different world from the one she had known before. Suddenly she was surrounded by unfamiliar faces, machines, wires and constant medical procedures. On top of this, children with kidney disease often develop high blood pressure because their kidneys lose the ability to filter fluids and regulate hormones that control blood vessel constriction. Strict diets are also necessary to reduce the build-up of toxic waste products, prevent bone disease and avoid dangerous fluid and mineral imbalances. Before becoming ill, Lily had loved food. Now her diet had been reduced to just a handful of safe options and her fluid intake had to be carefully monitored so it did not exceed 450ml a day. "It's literally a whole different life now," Amy said. "She's got a NG tube in her nose for medicines and feeds if she doesn’t drink enough herself. We have to use syringes to help her drink. She's also got the line in her chest and she knows she can’t pull it out or she’ll need another one fitted. It's been a massive change." Adjusting to such dramatic changes would be difficult for anyone, but for a small child who didn’t understand what was happening, it was overwhelming. One of the biggest challenges was helping Lily adapt to haemodialysis itself - sitting attached to a large machine with tubes and wires for hours at a time. "She doesn't necessarily have to sit completely still, but the wires can’t be pulled because that would cause problems," Amy said. At first, Lily was understandably terrified; retreating into the comfort of her parents. But slowly, day by day, the nurses and play team began to gain her trust. Play specialists Donna and Carys provided a constant stream of toys, games and activities, encouraging Lily to make slime, paint and play during treatment sessions. Gradually, she began to relax. Now, weeks on from her first dialysis session, Lily actually enjoys haemodialysis and sees it as special time with Donna and Carys. "One of the dialysis nurses explained it to Lily by saying the dialysis is charging her up," Amy said. "Lily understands when our phones are charging, so that’s how she sees dialysis now." Lily has also grown more confident with the wider hospital team and happily gives cuddles to nurses and plays with the other children on the ward. In a true sign of progress, Lily was finally discharged from hospital on Monday, May 25 - but will continue to go for her dialysis sessions. "She's on haemodialysis three times a week now - Mondays, Wednesdays and Fridays - for four hours at a time," Amy explained. "We’ve managed to improve things slightly by reducing the amount of protein she has. She can only really have protein when she’s having dialysis because the machine helps remove most of it." Play specialist Donna said: "It's lovely to see how far Lily has come since we first met her a few months ago. The opportunities to play haven't just distracted her during haemodialysis - in those early days, play helped make the environment feel familiar, because play is normal for all children. "It's amazing to hear her asking for the nurses and play team by name now. She feels safe with the hospital team, which is exactly what we wanted to achieve for her." Ryan added: "We can't thank the doctors, nurses, Donna and Carys enough for everything they have done for us and, more importantly, for Lily. "We'd also like to thank the charity’s Sparkle co-ordinators, Emily and Yvette, for everything they’ve done - arranging for Lily to see Gabby’s Dollhouse Live and making her birthday so special. You’ve all made this life-changing situation bearable." Lily continues to fight every day and still faces a long road ahead. "She's so strong," Amy said. "I honestly don't think I could have coped if I'd been in her position." "Ryan and I just have to stay strong for her," she added. "When she was on that ventilator, we both thought she wasn't going to pull through. But she surprised us. She really surprised us. You'd never think that she's gone through all of this in the way she acts. "But she really does have a long journey ahead." The local community have supported Lily's journey by creating a JustGiving page, intended to help ease the burden of fuel costs, hospital meals, and essential bills - allowing Lily’s parents to focus entirely on what matters most: being there for their little girl. The page is still open for donations and can be found here. Lily and her family will also be among those attending The Noah’s Ark Charity's Superhero 5K Family Fun Day on 28 June in Sophia Gardens, Cardiff . The event will hopefully raise much needed funds to support young patients at the Noah’s Ark Children’s Hospital for Wales. For more info, click here .