Harrison’s story

Last week we celebrated long term patient Harrison’s fifth birthday with a visit from an orange Lamborghini to the children’s hospital. Harrison has been a patient at the Noah’s Ark Children’s Hospital for the last two months after he was diagnosed with the incredibly rare disorder of the immune system called Guillain–Barré syndrome.

Back in February this year, Harrison, who was four at the time, became unwell with Scarlett fever. Though he seemed to get better, he woke unsteady on his feet in the night a few weeks later with a rash developing on his legs. At his local hospital, Harrison underwent a whole host of tests and scans but doctors were bewildered as to what could be making him so unwell. In the meantime, Harrison’s condition was getting rapidly worse and he had begun to complaining of a burning sensation in his legs.

Mum Alex said: “Whatever it was seemed to be rising from his legs up. What started as unsteadiness on his feet progressed to no sensation in his legs leaving him unable to walk. His voice also became very squeaky and while he had a little cough, it was as if he was unable to clear his throat with a full cough.”

With his condition continuing to deteriorate, Harrison was rushed to the paediatric critical care unit at the Noah’s Ark Children’s Hospital, which is the only one of its kind in Wales. It was here that the clinical team started to suspect that Harrison was suffering from Guillain–Barré syndrome, a rare condition that effects the peripheral nerves. As with Harrison, Guillain–Barré syndrome is often preceded by a virus infection which leads the immune system to attack itself. The condition usually starts in the lower limbs, resulting in muscle weakness or paralysis. As Harrison’s symptoms fit, specific tests were conducted, and the diagnosis was confirmed.

Literally overnight, Harrison had gone from a happy, active little boy to a child that couldn’t move, eat, or even breathe for himself. He spent the next three weeks sedated and ventilated while doctors tried to get his symptoms under control. It was understandably a terrifying time for the family who could be given no reassurance about what the future held for their little boy.

It was at this point that the family were introduced to sparkle co-ordinator, Emily. While Harrison was on PCCU, Emily started by bringing the therapy dogs to visit him and as he began to show signs of improvement she would also bring treats and glitter tattoos to brighten up his day.

Harrison was slowly weaned off the ventilator on to a less invasive form of ventilation before gradually being able to breathe unaided. As he continued to improve, Harrison was moved to Island Ward where the occupational therapy and physiotherapy teams are working together to support him with his rehabilitation. While he has a way to go, Harrison’s recovery to date has been a testament to the resilient little boy he is. His goal now is to get into the pool by himself in Centre Parcs this September.

Emily continues to work alongside the play team on Island ward to brighten up Harrison’s days, most recently by organising some extra special treats for his fifth birthday.

Alex said: “Emily is absolutely amazing. She has made the effort to get to know Harrison and his likes and dislikes, so when it came to his birthday she knew exactly what to do. Harrison was absolutely amazed to be taken outside to sit in a real Lamborghini and be given a mini version of the car as a gift – though we all laughed when he was almost as excited to spot a passing bus! You could see that Emily was so genuinely happy for him on his birthday which as a mum was such a lovely thing to see.”

Harrison’s story is an example of the many touchpoints you, our supporters, have in the care of young patients at the Noah’s Ark Children’s Hospital for Wales. Your donations helped to build the hospital that houses all the specialist teams involved in Harrison’s recovery. You helped fund the machines that helped Harrison breathe when he wasn’t able to and the play team who support and distract Harrison through play. You also make it possible to fund sparkle co-ordinator Emily, whose sole job is to bring smiles and happiness to the lives of young children in hospital.

Thank you.