25/10/2025
7 years ago, Ivy (pictured in frame) sadly died at the age of 11 due to a rare disease called Epidermolysis Bullosa (EB), which causes the skin to blister and peel at the slightest touch.
Ivy was the eldest of 3 children, including her sister Grace pictured here.
Her painful and complex condition required around-the-clock care and medically assisted bathing, but despite this, her family says she never complained.
Mum Hannah is now one of 16 specially trained parent mentors supporting families through the Strengthening Connections Parent Mentor Program at the Women's and Children's Health Network.
The initiative connects parents caring for a child with a life-limiting illness, or whose child has recently died, with a trained parent mentor who has a shared, similar experience.
"I feel really good about helping parents who are going through whatever horrible journey they are with their children – even if it's just offering one simple little chat, or one tiny bit of advice," says Hannah.
Program Co-ordinator Estelle said the program was born from feedback from parents whose children received care and support from the team.
"What we heard was that it would be helpful to talk to someone who had their own personal experience of caring for a child at end of life," says Estelle.
"Parent mentors are an invaluable part of the WCH Paediatric Palliative Care Service. They can provide advocacy and comfort, as well as bereavement support for families."
Thank you to The Hospital Research Foundation Group for making this initiative possible.
To learn more, visit brnw.ch/21wWOAF
