Henry’s story

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Est. read time: 4-5 minutes.

A talented ten-year-old says music therapy sessions at a leading children’s hospice helped unlock his passion for drumming.

Henry Barnard has Spinal Muscular Atrophy (SMA) – a genetic condition that causes muscle weakness – and receives care from East Anglia’s Children’s Hospices (EACH) at The Treehouse.

He and his family have been regular visitors there since he was two. One of the highlights has been sessions with Music Therapist Ray Travasso and he and brother George, 11, recently had the chance to showcase their skills at EACH’s Treefest event.

George sang and played the guitar, with Henry on the drums, and together the pair performed three Oasis classics. Both Henry and mum Claire say his musical journey began at The Treehouse.

“I enjoy acting and performing, being on stage in front of an audience,” said the pupil at Kyson Primary School, in Woodbridge.

“EACH gave me those opportunities when I was little and I enjoyed playing at Treefest. I didn’t feel nervous at all. Everyone at EACH has always been very supportive and caring.

“They always chat to me and ask questions. They like to know what I’ve been up to. They remember lots of people and it’s very inclusive. It’s definitely somewhere I’d recommend to other children like me.”

Claire looks back with huge fondness on Henry’s sessions with Ray.

“He was probably only two when they started,” she said.

“He used to go and play the drums and that was the start of his musical journey. He’s got real musicality and that began with Ray. Ever since, he’s always been keen to play and get involved with music.

“Henry recently had two jamming sessions with Ray, including one with George. They enjoyed learning new tracks and hope to spend more time making music at The Treehouse.”

Thanks to EACH, Henry and George weren’t the only ones to enjoy music and performing. Claire joined the hospice choir and was part of numerous concerts, including one at Bury St Edmunds Cathedral.

“I always enjoyed rehearsals and our many performances, which were here, there and everywhere. Henry and George would come to the shows and performances and sometimes get involved, too.

“For instance, there were services at St Augustine’s Church, across the road from The Treehouse, at Christmas. George and Henry would dress up as kings. They enjoyed doing some performing and acting.

“I remember another Christmas event at The Treehouse. Henry dressed up as Peter Pan, George was a lion and I was Tinkerbell.

“We put on a show and the boys got to sing, so music has certainly been a huge part of our Treehouse journey.”

Henry, who plays Powerchair Football for Norwich City at regional and national level, has also enjoyed using the hydrotherapy pool at The Treehouse.

“His whole school year group goes swimming and it’s not something Henry can do, so EACH has arranged for him to use the hydro pool at the same time,” said Claire.

“They’ve been very good at accommodating him, so that when Henry’s friends are swimming, he’s swimming, too.”

Henry, who has one more year left at primary school, can look back on many other highlights along the way, thanks to EACH. One that springs to mind was being given the opportunity to be mascot for Ipswich Town Football Club.

Dad Paul carried him to the centre circle and he met the players before the match. Claire and Paul have another son, four-year-old Hugo, so time restraints mean they now spend less time at The Treehouse.

However, they are grateful to be invited to events and always feel a close connection with the charity.

“EACH has been a big and positive part of our lives and it’s always nice spending quality time together at the hospice,” said Claire.

“Even though it’s now trickier for us to fit in, we certainly feel we’ve benefited in so many ways and everyone has always been supportive – not just of Henry, but all of us and George, especially. He’s always been able to get involved.

“They’ve always included grandparents, too, so they’ve had a great time joining us. Even if we haven’t been able to attend, the offer has always been there and that’s lovely and much appreciated.

“It’s like a home from home and everyone always recognises and remembers the boys. They always make a fuss of them. From a parents’ point of view, it’s lovely and offers us something we wouldn’t get anywhere else.

“Everyone has always been welcoming, smiling and supportive and we’ll always be extremely grateful.”

Published in August 2023

Families’ stories and experiences are unique to them and we have been kindly granted permission to share this family’s story. If you have been affected by what you’ve read or have a question and would like to talk to someone, please contact your local children’s hospice service or Together for Short Lives, the UK charity that supports families caring for seriously ill children (tel: 0808 8088 100).

 

Would you like us to write and share your own family story?

We give all those receiving support from EACH the opportunity to share their family story. All family members are welcome to get involved if they’d like to and we will never share your story until you are completely happy with it. If you have any questions or are interested in finding out more, please contact Matt Plummer, EACH Media and PR Manager at matt.plummer@each.org.uk.

EACH gave me so many opportunities when I was little.

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