Noah’s Ark Children’s Hospital: Supporting West Wales Families

West Wales children make more than 4,000 visits to the Noah’s Ark Children’s Hospital each year One year on from his diagnosis with a rare and serious neurological disorder, a seven-year-old Ceredigion boy has come full circle, thanks to the outstanding care of staff at the Noah’s Ark Children’s Hospital for Wales. In 2025, Lewis, from Aberaeron, spent seven long months as an inpatient at the hospital after being diagnosed with Guillain-Barré syndrome, a rare condition that caused him to lose the ability to walk. The nightmare began when Lewis complained of leg pain after a game of football in the summer of 2024. His parents, Liz and Alex, didn’t think much of it at the time, but when the pain continued, they took him to their GP. They felt reassured when the doctor put Lewis’ leg aches down to growing pains.

Things settle down for a while until, during another football match a few weeks later, Liz noticed that Lewis was running strangely. She said: “It looked like he wasn’t running properly, it wasn’t normal for him.” Lewis’ parents took him to their local A&E where scans and blood tests came back clear. Stumped as to what could be causing the problems, the team called in orthopaedic specialist, who suspected a potential sporting injury. The family were sent home and told to visit the fracture clinic a week later but by then, Lewis’ walking had become progressively worse. Strangely, he wasn’t experiencing any pain. Then one day, Lewis completely lost the ability to wal so his parents rushed him back to hospital. “After an MRI and a lumbar puncture, we were blue lighted to the Noah’s Ark Children’s Hospital for Wales with suspected Guillain-Barré syndrome.”

Guillain-Barré (GB) is a rare and serious neurological disorder that occurs when the body’s immune system attacks the peripheral nervous system, causing muscle weakness and tingling. It can also result in paralysis. At Noah’s Ark, Lewis continued to deteriorate rapidly. He was put on infusions which slowed the condition and stopped it from effecting his upper body. Nevertheless, Lewis spent four weeks learning to walk again. In the November, he finally went home – but the relief was short lived. After just two weeks, Lewis lost the ability to walk again, but this time, the condition accelerated far quicker, also affecting his upper body and causing him to cough and have difficulty eating. Lewis was also having breathing problems.

Specialist care for West Wales children

“It looked like he wasn’t running properly, it wasn’t normal for him.”

Lewis is now back at school after spening seven months at Noah’s Ark Children’s Hospital for Wales He was rushed straight back to Noah’s Ark where he began IVIG treatment. The process involves taking antibodies from donated blood, then delivering the healthy antibodies into the bloodstream to fight and dilute the GBS antibodies that damage the nerves. Although the IVIG was stopping Lewis from getting any worse, he wasn’t getting any better. Lewis was put on further treatment, this time involving eight-hour steroid infusions once a week for five weeks. It meant that Lewis spent Christmas in hospital. He then spent a further seven months in hospital undergoing intensive treatment and physiotherapy with the support of hospital staff. Today, Lewis is doing incredibly well. Now seven, he’s back in school, and enjoying being a child again, something that once felt heartbreakingly uncertain.

But returning to normal life has brought mixed emotions for the youngster.

A wider perspective

“We knew this day would eventually come,” said Liz. “Lewis woke up feeling sad, but also happy. Happy he’s come so far, happy he’s beating Guillain-Barré syndrome and really happy to be back in school with friends. But on the flip side, he was really sad. “He misses the hospital. He misses Bechan, the ward counsellor. He misses Polly, the play specialist who took Lewis on adventures around the hospital. He misses Emily and Morgan from the Noah’s Ark Charity, who used to make us laugh so much. I knew he would miss Noah’s Ark when we got home, because although it was hard, it wasn’t all bad thanks to all these people.” Inspired by the care Lewis received, his swimming teacher, Martienus Thomas took on the incredible challenge of walking from Aberaeron to Noah’s Ark last summer, raising £5,670.78.

The funds helped to provide hot meals for parents spending Christmas Day at their child’s bedside. Lewis’ parents know just how much a warm meal can mean to families facing their hardest Christmas. Lewis’ journey from hospital to home shows not only his strength but also the difference a little kindness and support can make for families facing tough times. The goal of the Noah’s Ark Children’s Hospital Charity is to create brighter todays and better tomorrows for the 90,000 children cared for at our nation’s children’s hospital each year. The charity ensures that treatment and outcomes can continue to improve by funding new and innovative medical equipment and facilities. It supports children and families through its emotional support service and the much-loved play specialist team and it invests in the future by providing technology that helps train the clinicians of tomorrow. Every year, children from West Wales make more than 4,000 visits to the Noah’s Ark Children’s Hospital for Wales for specialist care that isn’t available locally. This means almost every community knows a child or family who has needed care at Noah’s Ark. You can help make a difference close to home. By volunteering, fundraising, partnering as a business, or supporting local events, you’ll help ensure children and families across West Wales continue to receive life-changing care when they need it most. To find out more, visit noahsarkcharity.org