Ellie's story

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“The services that Very Special Kids offer are one-of-a-kind. Besides close family, they are the only ones I trust with Ellie. We are just so grateful they are here for us.”

- Mel, mum of 15-year-old Ellie who has Wolf Hirschhorn syndrome and 24-Hour Treadmill Challenge participant

15-year-old Ellie was born without her right eye, with a cleft lip and other unique facial features. She has a rare genetic condition called Wolf Hirschhorn syndrome that affects her in many ways. 

“Ellie suffers from seizures and she also has a very compromised immune system… For us getting a diagnosis was a huge relief, it gave us answers and helped us move forward and help Ellie,” says Mel. 

The level of care Ellie requires creates additional challenges for her parents Mel and Luke, as well as their ten-year-old son Cooper. Ellie can’t talk or walk by herself, and requires special care for all her daily needs. 

“The Very Special Kids hospice gives us much needed respite…The carers and nurses there made us feel so confident, and we found comfort knowing that Ellie was in great hands. It allows us to have special time with just Cooper and Ellie, being the social girl she is, always has a fun time away,” says Mel.  

Ellie’s family have participated in the 24-Hour Treadmill Challenge for seven years, raising vital funds for other families like theirs.