A LITTLE girl from Leicester is the only person in the world to be diagnosed with an incredibly rare ‘Benjamin Button’ disease.
Isla Kilpatrick-Screaton, 4, was born with Mandibuloacral Dysplasia, which is a rapid ageing condition, but doctors discovered she’s the only person with her particular mutation.
The condition causes premature ageing of her major organs, including her kidneys and heart, and gives her an appearance much older than her years.
Isla’s mum Stacey told Truly: “The mutation [doctors] found, they’d never seen before, they were unable to give us any answers.
We have no one we can compare Isla with.” The family try their best to live every day to the fullest, and after sharing Isla’s life on TikTok, they quickly found fans from around the world.
Stacey added: “When we first started TikTok, because we were talking about premature ageing, they went with the ‘Benjamin Button’.
It definitely drew people’s attention to it.” Stacey admits there can be a lot of negativity to sharing Isla’s life online.
She told Truly: “Most people thank us for sharing Isla’s life with them, I’ve had the odd hate comment, at first that was hard to understand, but now it just gets ignored, 99% is positive and we appreciate it.” The family have set up a GoFundMe to help fund Isla’s medical expenses and family holidays to create more fun memories together.
Stacey said: “I try my hardest to envision the future and Isla always being in it.
I hope she gives me mischief for many years to come.” Isla’s TikTok: https://vm.tiktok.com/ZMdV2n1Hx/ Fundraising pages: https://gofund.me/5071d06a / https://www.paypal.me/islaspaige