Rainbow Trust Children's Charity - providing support to families who have a child with a life threatening or terminal illness

Rainbow Trust Children's Charity

Rainbow Trust Children's Charity provides a unique and special service to families when their child has a life threatening or terminal illness. Set up in 1986, they offer practical and emotional help through eight teams of Family Support Workers. They aim to maintain a sense of normality, and keep families together by ensuring support is provided not only to the sick child, but also anxious parents, grandparents and worried brothers and sisters. No other organisation provides the extent of professional care and consistency of contact as Rainbow Trust. Their work is a vital emotional and practical lifeline to those who turn to them.

Rainbow Trust offers support at any stage of illness, from diagnosis, during treatment and throughout bereavement. Very importantly, there is no time limit to the care they provide. Rainbow Trust will stay with a family until they feel that they can cope without their support, sometimes for several years after a child has died. Care is provided to families, irrespective of circumstance, ethnicity, social background, nationality or religion. Many of those who use Rainbow Trust's services are single parent families with little or no extended family support network.

Waterstone's is very pleased to announce that the Rainbow Trust is our chosen charity for 2010/11. Our support during this time will include money donated by customers through collecting tins in our stores and our booksellers taking part in events such as the London Marathon in aid of Rainbow Trust.

"Rainbow Trust Children's Charity is delighted to have been chosen by Waterstone's as their charity partner for the next two years. This partnership provides the opportunity to raise valuable funds to maintain our services for families who have a child with a life threatening or terminal illness." Heather Wood, Chief Executive of Rainbow Trust Children's Charity

Find out more about Rainbow Trust Children's Charity

Working with families

Lolly Heal with her Mum, SarahFour year old Lauren (Lolly) Heal has dilated cardiomyopathy, an enlarged heart caused by a common cold, and suffered an hypoxic brain injury due to having been starved of oxygen for so long when her heart stopped during an operation.

A lot of Lolly's brain died when she suffered the hypoxic brain injury and she lost her ability to move her muscles, communicate and became cortically blind. Her heart also deteriorated and, Lolly's parents were told that her only chance of survival was to have a heart transplant. However, after weeks on a ventilator, Lolly was eventually weaned off it and her heart began to stabilise.

"It was a very hard time for us," Sarah, Lolly's mum says, "even with occupational, play and physiotherapists playing with her, we were told that Lolly wouldn't make much more of an improvement and would spend the rest of her life, however long that will be, in a wheelchair and reliant on carers."

The family first heard about Rainbow Trust during Lolly's discharge planning meeting. Soon after Sarah and Tristan took Lolly home for the first time in 16 months Family Support Worker's Jayne and Sara began to support the family with life at home.

"They were there to listen to my worries and fears, to reassure me when I couldn't see how to deal with things. I was so anxious about Lolly and it was such hard work dealing with her physical needs and my emotions," Sarah says. "They offer us all types of support but the most valuable to me is providing me with a little respite time and giving Lolly quality fun time."

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