But Tilly never gave up and has been defying the odds ever since she was diagnosed!
Now 13, Tilly is fitted with bionic arms and is showing the world that her disability isn’t stopping her from kicking goals.
‘At first people would look at me and think my hands are quite creepy, but now kids are excited by them and it’s like I am a super hero – I love them!’ Tilly told 60 Second Docs.
Raising awareness Tilly is working with tech companies to help give other children with missing limbs the opportunity to use this bionic technology, so they can live like an ordinary kid.
The teen from Newcastle in the UK has started her own YouTube channel Tilly Lockey where she uploads makeup tutorials using her bionic arms!
She wants to inspire others with disabilities to reach for the stars and hopes that in the future people won’t be scared by bionic arms.
‘I don’t use makeup because I feel like I need it to look pretty I do it to see what I can achieve using these hands,’ Tilly told the documentary.