Parents grateful for musical legacy of daughter they lost mark 25 years with TV appeal

Jessie George was just nine years old when she was diagnosed with an inoperable brain tumour.

The lively, bright and musical girl from York died just five months later as her parents, musicians Lesley Schatzberger and Alan George, were preparing to take her to America for treatment.

They decided the money raised by their musician friends to help fund the trip should be used to help other children.

“The fund was named by Jessie herself when we were raising money to send her to the USA,” explains Lesley. “But after she died in Martin House Hospice we wanted to do something and we knew the power of music.”

The first thing they did was to use some of the money to buy musical instruments for Martin House Hospice in Boston Spa.

But it became clear that the staff weren’t exactly sure of the best way to use them and so Lesley and Alan decided to set up training courses for staff.

They also started to campaign with the eight children’s hospices that then existed to employ a music therapist.

“We offered to fund the post for a period of time after which they kept them on.”

Since then the number of children’s hospices in the UK has risen to 54 and Jessie’s Fund has helped to establish 44 posts for music therapists.

“Music therapists can help a child who cannot talk to communicate in other ways,” explains Lesley.

“They are highly trained psychological therapists. It is the therapeutic relationship between the music therapist and the child or young person.

“Using music in this way enables children to create their own unique musical language in which to explore and connect with the world and express themselves.”

But they were not happy to stop there.

They decided that the power of music could not only help children with life-limiting illnesses but also those with other communication difficulties.

And so 10 years after Jessie’s Fund was launched, they started to work in special schools.

“Musicians go into the schools and do interactive music sessions with the children and also train staff. Training is one of our key functions. We can’t be there all the time and so it is vital that staff feel confident working with the children.”

They have worked in 150 special schools and are now moving into hospitals.

They also work with individual children and families who aren’t able to access music therapy in school or hospices.

Lesley gave up her job as a professional musician to run the charity full-time as well as bring up her two other children, Hannah and Jacob, who was born after Jessie died.

“It was hard for him as he is very like Jessie although he never met her,” says Lesley.

“It was never my plan to stop being a professional musician to become a charity director and I did carry on being a musician for quite a few years, but the charity became too big.”

Lockdown has been a challenge for the charity although they have risen to that challenge, making a series of videos that parents can use with their children at home.

“We haven’t been able to do any face-to-face work but the videos have been a big success.”

And now the work of Jessie’s Fund is to appear on television in a BBC Lifeline appeal.

“I applied before coronavirus happened as it is a long process but we were accepted which is fantastic and will really raise the profile of the charity not just by way of fundraising but also just showing people that we are here.”

The 10-minute film to be shown on Sunday on BBC One is narrated by the charity’s patron, Maxine Peake.

“Our patron used to be Victoria Wood as I was at school with her,” says Lesley.

“When she died we were all devastated. Collections from her funeral and memorial service were donated to Jessie’s Fund and Maxine was there. I couldn’t bring myself to think of having another patron for about a year but then I realised we really needed to have one. We approached Maxine and she accepted straight away.

The programme talks about the work of Jessie’s Fund and highlights some of the children and young people it helps.

Caleb is one of those featured. He was born with a rare condition which affects his brain function, vision and mobility. He also has autism and very limited verbal communication. Caleb finds new environments challenging, so the family spend a lot of time at home.

His mother, Michelle, finds that it can be hard to connect to Caleb, and she’ll to do anything she can to foster connection.

‘It’s very difficult to connect with Caleb, and obviously you don’t have this visual connection of being able to look at each other as you normally would,” explains Michelle.

“ I think finding music therapy has just been a huge way of connecting with him, and brings him a lot of happiness, and it’s something we can do for him. Because we’re not musicians it’s not something we could have done on our own.

“Jessie’s Fund has allowed Caleb to have this therapy that wouldn’t have otherwise been available to him, and it’s opened up all these channels and opportunities that he never would have had.”

Although Jessie’s Fund will never make up for the daughter, who would have been 36 today, she lost, it does give Lesley some solace.

“We don’t know what Jessie would have achieved if she had lived, but we do know that she has achieved a lot by not living.”

Maxine Peake is presenting Jessie’s Fund Lifeline Appeal,on BBC One at 2.05pm on Sunday and again at 2.30pm on Tuesday on BBC Two.

For more information visit https://jessiesfund.org.uk/