Alexander’s story

Alexander is two years old and lives at home with his parents and two older brothers. They go to Kites Corner in Gloucester for respite care and daytime support. We recently joined them there for a family music day.

Alexander loved doing the actions along with the nursery rhymes so I know he thoroughly enjoyed it – his smile proved it too.

“Kites Corner is our purpose built multi-sensory respite centre and gardens here at James Hopkins Trust,” says Jo Bowden, Play Leader. “We provide support for families with children who have a life limiting or life threatening condition.”

“We had a huge shock with Alexander’s diagnosis,” says Louise, Alexander’s mum. “There was nothing out of the ordinary during pregnancy, but from the moment I held him I just knew. It was a long process to convince GPs and health visitors, but eventually Alexander was diagnosed with Jouberts syndrome. It is incredibly rare, which is maybe why it was so difficult for professionals to recognise his symptoms or place them together.

He is progressing well and doing the best he can. From that little floppy baby, we now have a stronger boy who is holding his head up and even attempting to sit independently. He requires full support with feeding, is nonverbal and has a visual impairment, but it doesn’t stop him from communicating his wants and needs.”

Jo: “Many of our children have sensory needs and music is a great way to communicate with them. We have a daily singing time and for some of the children this is their first introduction to singing and signing. It is wonderful to watch them as they begin to join in the actions to the songs.

It was great to have musician Annie from Music in Hospitals & Care come to share an hour of upbeat songs for families to join in with. She then played some more calm and relaxing music, which really helped the children to wind down. It is lovely to have some live music at Kites Corner to bring the families together in a relaxed social gathering that allows them to meet people they may not otherwise see.”

Louise: “Alexander responds really well to music and we love to sing together as a family. I came along to the music day with all three of my boys and we had a great time. Alexander loved doing the actions along with the nursery rhymes so I know he thoroughly enjoyed it – his smile proved it too.”

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