Steph’s story – “I can beat you!”
Teenager 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 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.
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
