GO BACK
A very special bond between sisters
February 18, 2025
Liz and her older sister, Jennifer, always shared a special bond.
The duo‘s favourite past time was to watch countless hours of eclectic TV shows together – from the quirky charm of Doctor Who to the nuanced intrigue of obscure Scandinavian crime dramas – and their shared love for finding shows became a meaningful form of connection.
Jen, who lived with quadriplegic spastic cerebral palsy, was only able to communicate with her eyes – looking left for yes and right for no.
Yet, Liz never saw Jen’s disability as a barrier and always cherished the uniqueness of their bond.
“She was the kindest soul, always saying yes to everything, no matter how difficult it seemed.”
However, life wasn’t always easy. Jen’s condition required constant care and attention, which sometimes made ordinary sibling activities a challenge.
When Liz was just 11, she was introduced to Very Special Kids, an organisation that would become a cornerstone in her life. The sibling support program offered by Very Special Kids opened up a world where Liz could connect with other children who, like her, had siblings with life-limiting conditions.
Liz reminisces about the sibling days and camps, “It was just so nice to have people that I could relate to.” The activities at a sibling camp can range from thrilling adventures like ziplining to more reflective group discussions, creating a safe and fun environment for children and young people to bond and share their experiences.
For Liz, these moments were not just about fun, they helped her feel seen and heard. During these times, Liz realised the profound impact of having a support network tailored specifically for siblings like her. These experiences were crucial in shaping her understanding of community and empathy, values that would guide her in the years to come.
In July 2021, Jen’s death left a void that seemed impossible to fill.
It was incredibly difficult,” Liz says. “It was during the pandemic. I had no support whatsoever, and I found it really difficult.
Liz’s grief was compounded by the lack of resources for bereaved siblings her age. She struggled to find a place where she could relate to others who had lost a sibling with significant disabilities.
After weeks of searching and feeling increasingly desperate, Liz reached out to Very Special Kids, hoping for a lifeline.
What she found was the Youth Advisory Group (YAG), a new initiative aimed at giving young people a voice in shaping services and support for families like hers.
“Having an opportunity to be able to talk and advocate for siblings and have impact on a sibling program is amazing,” Liz explains. Liz’s involvement with YAG allowed her to connect with Very Special Kids meaningfully and get the support she needed while also providing her with a space to advocate for better support systems for siblings.
“It means a lot because a lot of the resources out there for just general grief and also general support are just for parents or not for siblings. So being able to connect with siblings is really important and helps me a lot mentally.”
Through YAG, Liz has found her voice as an advocate, channelling her grief and love for her sister into meaningful action. She is now studying for a Bachelor of Social Work, driven by a passion for ensuring that siblings like her have the support and resources they need.
The YAG, in a way, has shown me the vast difference of having resources and support, as well as space in the market for sibling advocacy. The inequality of sibling representation and resources has become a big passion of mine.
Liz’s work with YAG has not only helped her heal but also given her a sense of purpose. She feels that she is honouring her sister’s legacy by contributing to developing sibling support services.
“At the end of the day, I know it’s what my sister would want me to be doing and would be proud of me for doing so,” Liz says with quiet determination.
Being part of YAG has shown Liz the importance of giving young people a voice in creating services that truly meet their needs.
The group’s efforts are paving the way for more inclusive and practical support for siblings of very special kids, ensuring that their unique experiences are recognised and valued.
