“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.”
- 14-year-old Steph who has mitochondrial disease
Fourteen-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 and seeked the help of Very Special Kids.
Steph shares: “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.
“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.
“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.”
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.”
