Louise Wedderburn is a British girl with a penchant for baking and a love of fashion. Wedderburn, who hopes to be a fashion model, was also born with fibrodysplasia ossificans progressiva (FOP), an extremely rare genetic disease that may someday soon freeze her body into a "human mannequin."
Now, the brave teen is speaking out about her condition and her determination to rise above it in a new documentary set to air Thursday night in the UK. Channel 4's "The Human Mannequin" follows Wedderburn as she navigates the daily obstacles faced by people with FOP, which causes joints to lock into place.
The teen's documentary has received a good amount of buzz, at least in England, where she was trending on Twitter in advance of the ITV interview publicizing her documentary.
— Louise Wedderburn (@LuluW93) November 1, 2012
— Vicki Cartney(@beans179) November 1, 2012
"It's never going to stop me from doing what I want to do," Wedderburn said, according to STV Local. "I don't want to be one of those people that let their illnesses get them down."
Wedderburn was diagnosed with FOP at age 3. According to the International Fibrodysplasia Ossificans Progressiva Association (IFOPA), the genetic disease affects just one in 2 million people. In Wedderburn's native England, there have only been 45 confirmed cases, The Independent reports.
The condition, "causes bone to form in muscles, tendons, ligaments and other connective tissues," according to the IFOPA. "Bridges of extra bone develop across joints, progressively restricting movement and forming a second skeleton that imprisons the body in bone. There are no other known examples in medicine of one normal organ system turning into another." With no known cure, the life expectancy of those with FOP is 41.
Although there is little pain, Wedderburn told ITV that bending is particularly difficult. Her right elbow has been locked since she was a toddler.
But Wedderburn also said she is glad to be able to raise awareness of her rare condition. The teen, who someday soon may be confined to a standing wheelchair, continues to work toward a job in the fashion industry -- she has even landed temporary positions at London Fashion Week and Elle magazine, according to The Independent.
Despite her many challenges, such as having to be accompanied at all times and being careful to not let her body lock another joint, Wedderburn remained upbeat, according to the documentary.
"If I start to think about things I would never leave the house," she said in the documentary.
With her future uncertain, Weddernburn said she strives to live in the moment.
"It doesn’t actually scare me because I don’t think about it," she told the Daily Mail. "If it happens, it happens, and if they find a cure then that will be amazing.'
Photos courtesy of Channel 4.