Bubble girl's lonely life

February 7, 2012, 6:18 pm Francesca Belperio Today Tonight

After suffering a severe reaction to pest sprays, a promising young designer has had to spend the last three years living locked up in a bubble.

Trapped behind a glass wall, Amelia Hill can only sit and watch as the days, months and years pass her by.

In the last three years she's been isolated, unable to leave a tiny room, and says the slightest breath of air from the outside world could cause her to collapse, and even die.

Eight years ago Amelia was a vibrant, young fashion designer, writer and magazine stylist. She had big dreams of travelling to New York and writing for US Vogue.

More stories from Today Tonight

“Things were just taking off, and she was so full of life, and you know so hopeful, and suddenly this is what's happened to her, and it's just all come crashing down,” Amelia's mother Danja said.

Danja has watched helplessly as her daughter succumbed to the mysterious condition.

“She’s been to so many specialists who just don't know, they just haven't got an answer. They're baffled, so that's been very disheartening and very frightening,” Danja said.

Today Tonight's latest health stories

Many initially diagnosed her with chronic fatigue, some people even accused her of faking it, but only in recent years has her condition become recognised in Australia.

Amelia suffers from an environmental illness called MCS or Multiple Chemical Sensitivity - and she's not alone.

It's believed up to six per cent of Australians have an allergic response to chemicals that surround us in the modern world.

Some sufferers get headaches or nausea, but for Amelia the slightest exposure brings on an extreme reaction. Her condition has led to reactive airway disease, intolerances to foods, and anaphylactic seizures.

“For the average person, your system will metabolise toxins that you breathe in, or that are on your skin, and you can excrete them. We’ve found that Amelia has a genetic marker, which means her body does not metabolise toxins or excrete them,” Danja explained.

Researchers in Canada and the US suggest MCS begins with a chemical injury, and Danija believes Amelia's injury was triggered in the late 80s when their family home was sprayed for termites.

These days Amelia rarely sees her family or friends, as human contact is too risky.

In the last year her condition has deteriorated. A former high school teacher, Danija is now her daughter's full time carer.

And visitors to her unit are only permitted under strict conditions - no deodorant or fragrance is allowed, and to enter her space clothing that had been washed in bicarbonate soda must be worn.

Because Amelia also reacts to electromagnetic fields, the television is rarely on, and she can only use her computer and phone for a few minutes a day. Most days she's left to occupy herself by writing in notebooks that have been aired out, and only in pencil.

What she misses most are the simple things we take for granted, and even talking becomes exhausting.

“She feels very down, very distressed,” Danja said.

Amelia's family has turned to natural therapies for answers, but the only way she'll really recover is by moving to a safer place - a home away from chemicals and mould.

Peter Evans, also an MCS sufferer, heads the South Australian Taskforce on MCS, and says finding suitable housing is the biggest challenge.

“People on the severe end of the spectrum end up without accommodation. They're living in tents, in caravans, out in the middle of nowhere, with no support and no electricity. Living in people's verandas, in the backs of cars, they don't have access to healthcare because healthcare services have a lot of chemicals in there,” Evans said.

“It is possible to build these places, and it's not too expensive - mainly it’s things that are un-reactive, so cement, glass, metal.”

And that's also why Amelia is telling her story - to give others a voice.

Body painter and good friend Emma Hack has started fundraising to help Amelia find a new place:

“I know Amelia would do anything for me, and anybody else, so why wouldn't we do that for her?”

At just 36, Amelia's still got so much more to give.

“My one greatest wish is that it's not too late for me, that it's possible to regain my health and to really to live, to live life and to live all those hopes and dreams that I have for myself,” she said.

http://au.news.yahoo.com/today-tonight/latest/article/-/12835734/bubble-girl-s-lonely-life/