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Helping families be with their child

Having a family member in palliative care with a life-limiting illness is a stressful, challenging time. If that person is a child or teen, the impact is heartbreaking.

Craig and Jenny Butters faced these challenges when their son, Nicholas, lost his brave battle with childhood brain cancer. Nicholas lived his final days in a busy acute treatment hospital ward. There was no privacy for friends and family to spend time with him or say goodbye, and no space for him to pass away with the dignity his life deserved.

It was in his final weeks that Craig and Jenny recognised the need for specialised facilities for children with terminal illness, and support for their families. This led to the establishment of the Nicholas Trust in 2005. Their mission was to make sure families impacted by the need for paediatric palliative care have the best services available.

“We thought there must be a better way for families and children to go through what is a very difficult time in everyone’s life. We envisaged that being able to at least have a bed and facilities where you could be with your child in a home-like environment.” - Craig Butters

For nine years, Newcastle Permanent Charitable Foundation has proudly supported the Nicholas Trust’s ability to bring comfort in the darkest of times and provide opportunities to make the most of precious moments that would otherwise be lost forever.

Beginning with paediatric palliative suites at Taree, Maitland and Tamworth, the Charitable Foundation supported the Nicholas Trust to bring the first adolescent palliative space to Newcastle’s John Hunter Hospital where families can spend time together in peace and privacy. Most recently, the Charitable Foundation supported the One Less Worry equipment loan pool which has empowered families with choice of where to receive care and how they want to spend their time to make the most of precious moments together.

“We have the best model of care. Providing services and facilities that are meeting the needs of so many families is the envy across Australia,” said Jenny.

About the Nicholas Trust

It is estimated that within our region 300 to 400 children, under the age of 18, suffer a life-limiting illness. 40 to 50 of these children will die this year.

The Nicholas Trust is committed to the care of children in the final stages of their young lives. The trust has established services and facilities specialised to the needs of children with life limiting illness and their extended families. Through the support of many individual, community and corporate groups the trust has successfully advocated for the provision of Paediatric Palliative Care services for our children.