Olivia Court spent the first years of her life unable to run, jump, or even walk, but thanks to a revolutionary "second skin" suit, the 3-year-old British toddler can now run and play like other kids her age.
Olivia was born with a severe form of Ehlers-Danlos Syndrome (EDS), a rare genetic disorder that causes her joints to be hyper-flexible -- so flexible that her hips and knees would regularly dislocate when she tried to walk.
When wearing a revolutionary custom-made lycra suit however, Olivia's spine and joints are supported enough to prevent dislocation. Her progress has been so promising, that surgeons have delayed and will possibly cancel intensive surgeries to reconstruct Olivia's hip joints, the girl's mother, Lena Court, told ABCnews.com
EDS affects the body's ability to build collagen. While most people associate collagen with youthful-looking skin, these naturally occurring proteins are also essential for building ligaments, arteries, and other body structures.
Collagen is the mortar that holds your cells together, and when it is lacking, those with Ehlers-Danlos suffer from overly-mobile joints, super stretchy, paper-thin skin, easy ligament tears and ruptures in their internal organs and blood vessels.
Olivia's parents first noticed something was wrong with their little girl when she was slow to crawl and there was a mysterious "clunking" in her joints when she moved that could be heard from across the room, Lena Court said.
When Olivia's foot got stuck under the couch and easily turned all the way around, facing the wrong direction, her parents knew something was seriously wrong because Olivia didn't even flinch.
It was only after a slew of misdiagnoses -- several of which indicated that Olivia may never be able to walk -- and a number of unsuccessful surgeries, that the Courts were finally referred to a geneticist, who diagnosed the little girl with Ehlers-Danlos Syndrome.
Painfully intensive physical therapy had helped Olivia strengthen her muscles enough to allow her to take her first steps. But she still dislocated frequently and suffered from chronic fatigue.
Then a local club, the Earl Shilton Lions Club, agreed to do what the United Kingdom's National Health Service would not: fund an experimental Second Skin Lycra suit to support Olivia's growing limbs. That's when thing really started to change for her.
"Olivia [had] watched her friends running, jumping, climbing and playing whilst she laid on the floor," Court said. "She had never worn a pair of willies and kicked up the autumn leaves." With the new suit, which she wears eight hours a day, "the improvement in her is amazing. She still needs her wheelchair when she's out, but she can play for longer, and even run and jump," Court said.
"It is by no means a cure for her condition, there is no cure for EDS, but this Lycra Suit has…given Olivia a lease [on] life!"
Lynn Sanders, 52, founder of the Ehlers-Danlos Syndrome network C.A.R.E.S., Inc. in Wisconsin, suffers from a similar form of Olivia's disorder, known as hypermobility EDS, which affects the joints and ligaments.
Sanders' EDS started when she was in her teens. She had joint pain and easy sprains. For the first thirty years of her life she was told she was merely having growing pains, or that she was a "klutzy kid."