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Meet our Very Special Advisors
August 26, 2026
A new pilot initiative is giving children and young people with life-limiting conditions a direct voice in shaping services at Very Special Kids.
Inspired by the success of our other sibling advisory groups, the Very Special Kids Advisors bring together young people directly supported by Very Special Kids to share ideas, give feedback and support other children and young people in the hospice.
The Very Special Kids Advisors:
- Help adults understand what children and young people need
- Makes sure information is easy to read and understand
- share ideas to improve the support and services offered by Very Special Kids.
Their perspectives can help make things better for every child and young person connected with Very Special Kids.
Meet our first three Very Special Kids Advisors and hear what inspired them to get involved:
“I like meeting new people and talking to them.”
Beatrice, 8, who lives with infant-onset FSHD muscular dystrophy
“I want people to feel welcomed, included and not alone.”
Charlotte, 16, who lives with Labrune syndrome
“I want other kids to enjoy staying here as much as I do.”
Ethan, 16, who lives with congenital methaemoglobinaemia type II
Over the coming months, we’ll introduce each of our Very Special Kids Advisors and share more about the unique perspectives they bring to the group.
