Ellis’ story

Until the age of 11, Ellis was a sporty child who loved playing rugby.  Suddenly, he started finding it difficult to concentrate at school and then, over the months that followed, he developed seizures, and his parents noticed one of his eyes had started to droop. Although his brain scan was clear, Ellis was diagnosed with childhood Parkinson’s.

Over the next five years, Ellis’ condition got worse.  He lost the ability to speak, his mobility became more and more limited and he experienced frequent, sometimes painful, muscle contractions. Eventually he was re-diagnosed with dystonia, a neurological movement condition that impacted every part of his daily life.

At the age of 16, Ellis spent more than four months at the Noah’s Ark Children’s Hospital for Wales. Throughout his time as an inpatient, there was one person who made an extraordinary difference to Ellis’s life –  senior play specialist, Polly.

Ellis’s mum, Jo, said: “Polly would come to see Ellis every morning when she started. She was amazing. Ellis idolised her and the weekends were long without her.”

Despite Ellis’s limited movement and inability to speak, Polly always found ways to reach him. One of the most treasured was a simple voice-recording button. Jo and the family would record themselves doing Joey from Friends’ famous catchphrase “How you doin’?” and Ellis would press the button whenever Polly walked into his room, or as they passed the nurses’ station on their daily walks.

Jo says that Polly saw Ellis’ character straight away and gave him back a way to express it.  “Above all else it was Polly’s demeanour that would get Ellis engaged. She made him happy on long, dark hospital days and would lift all our spirits just by being her. While the nurses were there for Ellis’s needs, Polly was there for his mental health. She was just amazing.”

Even when Ellis was readmitted months later, the thought of seeing Polly again brought him joy. Jo said: “When we were in the tunnels on our way from A&E to Noah’s Ark, I said to Ellis, ‘You’re going to see Polly in the morning,’ and despite how rubbish he was feeling, his face lit up. That says everything about how much Ellis thought of her.”

Polly was also there to support Ellis’ mum and dad too. She sat with him to give them a break, understanding that no teenager wants their parents with them every minute, especially when facing such intense care.

“It isn’t just play, it’s therapy. It changes the whole day. Polly always managed to get Ellis to laugh and smile.”

Ellis may no longer be with us, but the joy that play brought him, and the lifeline it provided will never be forgotten by his family. Ellis’ story is a reminder that play isn’t a luxury for children in hospital. It’s  a vehicle for hope, dignity, and emotional wellbeing.