Steph’s Story

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“Very Special Kids is the most amazing thing that’s ever happened to me.”

- Steph, 13-years-old

Thirteen-year-old Steph has been in and out of hospital her whole life. At 10-weeks-old Steph was diagnosed with nystagmus.  Then after years of extensive nerve damage the family received news that she has mitochondrial disease, a debilitating and potentially fatal condition.   

At age eight, Steph lost the ability to walk and after the death of her father that same year, Steph’s mum Kylie knew that her family needed extra support.  

At that time, it was more about getting help for Robbie (Steph’s brother) … but what I quickly learned was how much Very Special Kids supports the whole family, Kylie said. 

Steph shares, “Very Special Kids is the most amazing thing that’s ever happened to me…I want other kids to look their disease in the eye and say ‘you suck, but I can beat you’. The team at Very Special Kids has helped me to see that.”   

Thanks to the incredible generosity from across our Very Special Kids community, Steph and her family have received tailored support through counselling, advocacy, networking and peer activities which has helped everyone cope through the daily challenges of her illness.   

“When I think of Very Special Kids, I think of how much love they give and how much determination they have. What they do is amazing. It’s unbelievable. It’s spectacular.”  

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