A charity which has brought music into the lives of sick and disabled children all over Britain is celebrating its tenth anniversary. Mike Laycock talks to the York mother and musician who founded Jessie's Fund - and sees how music is benefiting youngsters at a Yorkshire hospice.

If you want to know how something wonderful could ever come out of something utterly tragic, you need only take a look at Jessie's Fund.

Jessie George was a happy, healthy York nine-year-old, who loved music. She already wanted to follow in the path of her parents, Lesley Schatzberger and Alan George, of Bootham, both professional musicians. "Mummy," she said one day. "How old do I have to be before I'm in a professional orchestra?"

Tragically, she was never to realise her dreams. Shortly after her ninth birthday, in November 1993, she started saying she could see two of everything. An optician reassured the family that her eye muscles had probably been weakened by 'flu. But then she began to lose her sense of balance.

"At first she found it amusing, and she would twirl around, falling to the floor laughing, get up and do it all over again," said Lesley, writing movingly in a new book about Jessie's Fund, which is being published this week to mark the charity's tenth anniversary.

"Soon, she was feeling unmistakably dizzy, and we booked an appointment with the family doctor."

Later, she was referred to hospital, where investigatory procedures revealed a devastating diagnosis, an aggressive and inoperable tumour in the brain stem.

She underwent a gruelling course of radiotherapy, during which she wrote:

"I will fight my bloomin' blob,

I'll fight it away and away,

I will fight it til it's gone

I'll fight it til the great day."

The radiotherapy shrunk the tumour, and friends began raising funds to help send Jessie to New York, where they believed a physician's nutritional therapy could help her. Jessie giggled and suggested calling it "Jessie's Fund".

But as the family began making concrete plans to take her to America, the illness returned during a family break in the Lake District. "In the middle of a beautiful walk in the hills, she suddenly went quiet for a few minutes and then said 'I feel wobbly again,'" said Lesley.

"My heart sank. We knew that when the tumour recurred there would be no more conventional treatment. She had already had the maximum radiation possible and chemotherapy was not an option."

Jessie went to Martin House Hospice at Boston Spa. From the moment the family was met at their car in the most gentle, sensitive and welcoming manner possible, Lesley said she knew they were in the right place. "Jessie loved being there," she said.

But Lesley felt there was one thing missing: creative music making.

"I felt sure that music could offer the children a uniquely valuable form of self-expression and enjoyment, however complex their medical needs. Although a professional musician, I had only a vague notion of what music therapy was, but I started to find out more about it and realised that a place like Martin House seemed to be crying out for it."

After Jessie died, the family decided the fund, no longer needed to send Jessie to New York, should continue "as a memorial to a normal little girl who had lived an abnormally short, but rich and happy life". They wanted the money to be used to pair seriously ill children with music.

By chance, one of the Martin House care team, Cathy Ibberson, had just qualified as a music therapist and wanted to work musically with the children. The fund's first task was to buy a selection of instruments for Cathy to use.

Three months after Jessie's death, Lesley applied for charitable status, having assembled a board of trustees and written a constitution.

Lesley said: "It was our aim to enable seriously ill and disabled children all over the UK to access the therapeutic power of music, whether through music therapy itself or through the less defined process of general creative musical experiences.

"We had witnessed how many children at Martin House are unable to communicate verbally, and we learnt that as many as 85 per cent of children using the services of children's hospices have either lost the power of speech through degenerative illness or have never had it."

Over the years, the fund has helped bring music therapy into children's hospices across the country, although its work has also extended into hospitals, child development centres, schools for children with special needs and even into the homes of some children.

Lesley says the fund has been very fortunate in having top comedian Victoria Wood as its patron.

"She and I had been friends at school, where we were both slight misfits: I had been absorbed by classical music, which went quite against the flow at that place and time, and she was also rather out of step with the average teenager - quiet and shy, but with a sparkling and outstanding wit."

Victoria Wood said in a foreword to the book: "I feel privileged to be a part of Jessie's Fund, however small. I have huge respect for the way Lesley has turned a devastating personal loss into something that will benefit so many people in the same situation. I'm glad to be connected with a charity whose aims I can really understand and support."

How music can make such a difference

As Cathy Ibberson begins playing the saxaphone, 13-year-old Madeleine Hay's face lights up.

Madeleine, from Selby, who suffers from Rett's Syndrome, cannot speak, but there is no doubt that she is appreciating and enjoying the music.

We are sitting in the music room at Martin House Hospice, surrounded by drums, keyboard, piano, saxophone, xylophone, trumpet and even a mandolin.

Cathy is spending the day at the hospice, bringing music into the lives of Madeleine and the other young residents - as she has done since Jessie's Fund made its first pay-out by buying a collection of musical instruments for the hospice near Boston Spa.

Cathy, a qualified paediatric nurse, who always loved music and considered a musical career when she was 18, is in no doubt that music therapy is hugely beneficial to children like Madeleine.

"As music therapists, we act as a harbour for the emotions the children bring to us," she said.

"We share a conviction that the art of music offers an endless source of communication."

She said therapy can also be very helpful for bereaved brothers and sisters, with special music workshops at the hospice and even weekends away. She said this can prove both extremely cathartic and uplifting.

She said that working with children who are losing skills requires patience, waiting, not expecting great leaps or changes. "However, the intimacy of a one-to-one musical relationship can bring great fulfilment."

Music Therapy in Children's Hospices: Jessie's Fund In Action, is published on Thursday by Jessica Kingsley Publishers, priced £17.95.

Evening Press readers can obtain a copy at the reduced price of £15.95, with free post and packing, by credit card by phoning 0207 833 2307, or through the website www.jkp.com, quoting the "Evening Press".

To make a donation to Jessie's Fund visit the website, www.jessiesfund.org.uk

Updated: 11:05 Monday, February 21, 2005