Lewis’ story

Last summer, six-year-old Lewis from Aberaeron, was a healthy, lively little boy . Until, with very little warning, he started to lose his ability to walk.

The family’s nightmare started when Lewis started complaining of leg pain after a game of football. 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 just to be sure. They felt reassured when the doctor too put Lewis’ leg aches down to growing pains.

Things seem to settle down for a while until on September 21, again at a football game, Liz noticed that Lewis was running strangely. She said: “It looked like he wasn’t running properly, it wasn’t normal for him. It was almost like he was taking the mic out of how he normally ran or like he was shuffling.”

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 then bought an orthopaedic specialist to see Lewis 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 got progressively worse. Strangely by this point, Lewis wasn’t experiencing any pain.

Liz said: “Then one day, Lewis just completely lost the ability to walk. We went into a complete panicked and rushed back to Carmarthen. After an MRI and a lumbar puncture that showed high protein, 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. This causes muscle weakness, tingling, and can also result in paralysis.

At Noah’s Ark, Lewis continued to deteriorate rapidly. He was put on infusions which slowed the progress of the condition and stopped it from effecting his upper body. Nevertheless, Lewis spent four weeks on Island ward learning to walk again.

On November 15th, Lewis finally went home – but the relief his parents felt was short lived. After just two short 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. Terrified, his parents also noticed that Lewis was taking long deep breaths, struggling to breathe. Lewis 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. But though the IVIG was stopping Lewis from getting any worse, he wasn’t getting any better either.

Lewis was put on another form of treatment which involved having an eight hour steroid infusions once a week for five weeks. It meant that Lewis wasn’t able to go home for Christmas, spending it in hospital instead.

Liz said: “Apart from the two weeks at home, Lewis has now been an inpatient at Noah’s Ark for 12 weeks. The hardest part of it all is that our family is separated. Our eight-year-old daughter, Libby, is in school and my husband and I are both self employed so he’s had to return to work.

“Lewis is surprisingly still in good spirits and despite the fact that he still has no movement in his legs and reduced movement in his arms and chest, the feeling is starting to return to his lower body. He’s working so hard in physio and though there may be a long road ahead, we’ll get there.

“The music therapy and counselling provided by the charity are also helping to build back his confidence and personality. Lewis enjoys music therapy so much and loves to express himself with the keyboard. And he loves to play games with Bechan, the ward counsellor. He’s able to be himself with them both and they’ve made him feel listened to which is so important.”

It’s thanks to supporters like you that the Noah’s Ark Charity is able to provide music therapy and counselling that supports Lewis’ emotional wellbeing while being in hospital. You have also helped fund the pull-down beds that his parents take it in turns to sleep on by Lewis’ side at night and some of the equipment that Lewis uses in physiotherapy sessions to help him gain strength again. Thank you.