In the hope of making life easier for families of young people aged between 13 and 24 nearing the end of their life, Jo Sinclair and Trevor Holcombe launched The Crystal Lee Foundation.
In honour of their daughter Crystal Lee Johnson who passed away in January from Malignant Peripheral Nerve Sheath Tumour, the foundation aims to be a pillar of support for families, educate communities to help understand the young person's life and act as a driving force for change in palliative care services to young adults.
The foundation was officially launched by Member for South West Coast Roma Britnell and the musical entertainment for the night was provided by Kreeya Gladman and Matt Price.
""The launch was fantastic," Ms Sinclair said.
"It was an amazing night.
"Going forward now we will be planning more events including an annual ball for next year."
Ms Sinclair spoke to the the crowd who gathered at The Wharf @ Port Fairy for the launch about the importance of the work The Crystal Lee Foundation will undertake.
"Care cannot stop after a child or young adult dies, this is simply not good enough," she said.
"I feel there's not enough acknowledgement of trauma in palliative care. I for one, believe it is the epiphany of trauma and this needs to be opened up in palliative care services as a priority for families after death.
"Sitting beside a loved one knowing they're going to die and there's nothing you can do for them is nothing but heartbreaking. But that of a child or young adult just makes it that bit harder.
"It was hard for Crystal as she realised what was happening to her.
"The age group we (the foundation) are supporting is complex on many levels due to the understanding of their fate.
"Families need extra support to manage this incredibly difficult situation.
"It shouldn't matter how old you are; whether you're three months old, 19 years old or 90 years old; age-appropriate care needs to be available."
The Crystal Lee Foundation will be at CAN-Ex on October 19 ahead of their first event 'Music at the Merrijig' on November 30.
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