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Lesley and Jessie's story

My life began in Manchester. Both my parents had come from Vienna, escaping from the Nazi invasion as children.

They married in 1947 and settled in Manchester. My family had a musical background, that was part of being Viennese, so I grew up in a house where classical music was played all the time.听

I first came to York to study music, and met my husband, Alan, who was a member of the Fitzwilliam String Quartet. I then went to the Royal Academy of Music in London as a post-graduate and began to work as a musician. Specialising in playing historical instruments, I became principal clarinet in The London Classical Players and the English Baroque Soloists.

Alan and I got married and we had our daughters, Hannah and Jessica.

Lesley Schatzberger, Jessie's mum

They were gorgeous little girls two years apart. They were good friends, good enemies! Hannah was the more extrovert, Jessica more introvert. Hannah was quite bubbly, curly haired and bonny. Jessica was all wispy and dainty like a little fairy with golden wavy long hair. Jessica was more interested in music than Hannah, she played the violin and she had a fantastic sense of humour.

She became ill just after her ninth birthday. She was dizzy and had started to get some double vision. When she didn't get better, she was admitted to hospital, where they diagnosed her as having an inoperable tumour of the brain stem.

She was offered radiotherapy and on 16th December 1993 we went to Cookridge where a Perspex mask was made for her. This was fitted to her face and then screwed to the table, so she couldn鈥檛 move and they could target the tumour. This did shrink the tumour and she got back on her feet. She even went back to school part-time.

We were in denial at this stage, but I鈥檇 heard of a doctor in New York who had devised a method of treatment based on nutrition. Someone I knew had been diagnosed with a terminal melanoma about 16 years ago, but he鈥檚 still with us after seeing this physician.

I thought he was going to be the best option, but it meant taking around 150 tablets a day and would cost over 拢30,000, which we didn't have. We鈥檇 given up work to look after Jessie.

Our musician colleagues started to collect money for us and there was a huge degree of support from the musical world, which we were blown over by.

One day, we were sitting round our kitchen table and we had raised about 拢10,000, so we were well on the way. Jess was sitting on the sofa and we were discussing the need for a specific bank account for the money. We were thinking of pretty lame names for the account, when Jessie said, 鈥淲hy don鈥檛 we call it 鈥楯essie鈥檚 Fund鈥欌��? So, Jessie鈥檚 Fund was born, named by her.

However, the tumour started to grow again in the April and we knew there was no more conventional treatment. Within three weeks she was dead, before we had chance to get to New York.

She spent the last week of her life at Martin House Children鈥檚 Hospice, which was an amazing place. She died on Friday 6th May 1994.

The day Jessie died, Hannah said, "I don鈥檛 want to be an only child". We hadn't plannded to have a third child, but we didn鈥檛 rule it out. So, eighteen months later, the three of us had another child; Jacob! He was the spitting image, as a baby, of Jessica.

He is his own man, he鈥檚 very talented on the fiddle. He started playing Jessie鈥檚. He now plays a full size violin made by my father who is a violin maker.

He sees himself as part of a family with three children and he says, 鈥淚鈥檝e got two sisters, one of them has died鈥�.

Hannah is one of the trustees of Jessie's Fund now. The committee is made up of trustees and two or three advisors from different walks of life and she鈥檚 a psychologist now so that鈥檚 quite helpful really.

Jessie鈥檚 Fund

Whilst we were at Martin House with Jessie she was a bit bothered by the level of noise. She wanted to go to her room, rather than be in the communal area where there was a radio, video and cds. We thought we could use music positively, rather than it just being musak.

After she died, we had all this money, over 拢15,000! We thought, 鈥淲hat shall we do with this money?鈥� It already had a name, Jessie鈥檚 Fund. I didn鈥檛 know what it was going to do, but I did know that it had to involve a mixture of music and children.

I talked to the head of care at the hospice, and told her that we鈥檇 like to help children鈥檚 hospices using music creatively and music therapy. She鈥檇 never heard of it and we discovered that other hospices hadn鈥檛 used music or knew how powerful it could be with children. Especially children who can鈥檛 talk.

There was some music therapy around, but it was a fairly new discipline. It鈥檚 now recognised and there are state registered music therapists.

We bought musical instruments for Martin House Children鈥檚 Hospice and set up some training courses, so that carers felt comfortable using simple musical techniques.

We then set about working with other children鈥檚 hospices, showing them how music therapy could help. When Jessica died there were only about eight, there are now about 40. We鈥檝e provided musical instruments for all of them.

We organise residential training courses and workshops and have established music therapy posts in about 27 hospices. We鈥檝e worked in hospitals, helped children in their own homes and we鈥檙e now working in special schools with creative music projects. It gives children with severe and multiple difficulties the opportunity to be involved in a creative music experience where they can maybe make their own music.听

We鈥檙e using music as a language and a means of expression.

Lesley Schatzberger