Steph’s story

Steph in her wheelchair, smiling

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 to Steph’s hands, feet and mouth, 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. Kylie heard about Very Special Kids services and decided to self-refer. 

At that time, it was more about getting help for Robbie (Steph’s brother) because I didn’t feel I had the capability or capacity to truly help him through all of this, but what I quickly learned was how much Very Special Kids supports the whole family, Kylie said. 

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.  

Steph shares, “Very Special Kids is the most amazing thing that’s ever happened to me. I have a disease that drains your energy, until you give up. I want other kids and families to have faith. 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.”  

Steph also stays at our children’s hospice where she enjoys taking part in sensory and visual therapies while being cared for by our multidisciplinary team. By staying at the hospice, Steph’s family have received much-needed respite. “Going in you just instantly feel at home… In every way they think about ‘how do we ease the burden?’,” says Kylie.  

“Very Special Kids has given me the confidence I need to continue with a happier life. I’ve made so many different friends there, and it’s just truly inspiring to see people get up, and come and look after sick children,” said Steph. “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.”