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How do you keep your child smiling when your world is falling apart? That was the terrible situation Simon and Stephanie White faced just before Christmas three years ago. They had just heard a cancerous tumour had reappeared in the brain of their daughter Shona, aged nine.
Their nightmare had begun two years earlier when the tumour was first diagnosed. It changed all their lives.
The subsequent operation left a lively girl who loveddancing and doing arts and crafts severely disabled and unable to do anything for herself.
Simon and Stephanie were forced to put their jobs on hold, taking it in turns to stay the night at Great Ormond Street Hospital in London while the other looked after their other daughter Iona.
At the hospital the family was put in contact with Rainbow Trust Children's Charity, one of three benefiting from this year's Independent Christmas appeal. It provides support to families with children who have life-threatening or terminal illnesses.
The Whites were assigned a family support worker named Val, one of a team that works with more than 1,000 families a year across the country.
"We wanted Val to spend time with our daughter Shona because her life was very restricted," says Stephanie. "For a long time all she really did was go to the hospital for medical appointments, physio and speech therapy."
Around once a week Val would visit the family to provide emotional and practical support, often driving them to hospital appointments.
"It took a lot of pressure off," says Simon. "If we wanted to have a break, Val would stay with Shona."
The support workers are sometimes described as "professional friends" because they provide not only the understanding, strength, commitment and familiarity of a family, but often much-needed detachment too.
"With friends and family you find yourself watching what you say because you don't want to upset them," says Stephanie. "But it wasn't the same with Val. Support workers can support you really well and let you pour everything out if you need to."
After surgery, radiotherapy and chemotherapy, Shona's cancer went into remission, although she remained very disabled and still needed endless sessions of treatment with everyone from physiotherapists to dieticians to speech therapists.
Then a week before Christmas in 2008, the family received a call from the consultant who said tests had shown more tumours.
Six months later Shona died at home in Uxbridge, West London. The family were able to care for her there with the help of Val and the Rainbow Trust, something for which they are very grateful. The day before Shona died, Val visited to help organise a birthday party for her favourite toy, Hippo. "We didn't know the end was as close as it was," Stephanie says. "To have Val come and have this party, Shona loved it.
"She was very sick by this stage and things were hurting – she couldn't sit upright, she had tumours in her spine, she was on morphine, she must have just felt dreadful. She had already lost the use of her legs.
"To have someone come in and take the pressure off you and be jolly with them, which we were finding very hard to do by that stage, was wonderful.
"Her last full day on earth, she had a wonderful time, she was even laughing, she was talking, the most that Val had heard her talk for quite a while...it was a blessing."
Rainbow Trust, which was set up in 1986 and is funded almost entirely by public donations, helped the family long after Shona's death, providing support and counselling and even taking her sister Iona out for the day.
Until recently, Val would still visit the family. "You do get offered bereavement counselling from other sources," says Stephanie. "But none of those people would have known Shona and the difference is that Val did – really well.
"She knew what we were talking about and we had shared experiences with her. She had been on the journey."
Charities we are supporting
Save The Children
Working in 120 countries, including the UK, the organisation saves children's lives, fights for their rights and helps them fulfil their potential. Its vital work touches more than eight million children each year – keeping them alive, getting them into school and protecting them from harm. www.savethechildren.org.uk
The Children's Society
The Children's Society offers crucial support to vulnerable children in England, including those who have run away from home. Many have experienced neglect, isolation or abuse and all they want is a safe and happy place to stay. Its staff provide essential support to desperate youngsters with nowhere else to turn.
Rainbow Trust Children's Charity
It provides emotional and practical support to families who have a child with a life-threatening or terminal illness. The Rainbow Trust offers the support these families wished they did not have to turn to, but without which they would struggle to cope.
The Independent believes these charities make a huge difference to many children's lives.
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