Appeal to ease Emma's pain

BY LOUISE RISK

In many ways, Emma Orange, of Hamilton, is the same as any other 18-year-old.

She likes Desperate Housewives, the Twilight series, and hanging out with friends. But Emma lives every waking moment feeling as though her entire body is burning from the inside out. Her only reprieve, sleep, does not come easily.

Emma has Reflex Sympathetic Dystrophy (RSD), a chronic neurological disease that affects the nervous system.

RSD causes nerves to misfire and send constant pain signals to the brain.

"It's like a deep burning that never stops," Emma said.

On top of this constant all-over pain, Emma also gets sudden random stabbing pains that she likened to being stabbed with knives.

Her mother, Nikki, said that she has read that RSD is three times more painful than childbirth.

Emma's agony began eight years ago when she was accidently knocked over by a boy while playing rugby.

What should have been a minor ankle injury never recovered and, instead, the nerve condition it triggered has spread around her body.

Emma's main coping mechanism is trying to block out the pain mentally, so being asked to talk about her condition had her looking as though she might cry.

But Emma fought back the tears, because she is strong. She did not cry even when talking about spending most of her time sitting at home alone watching TV because, these days, even easy tasks such as holding a book or playing one of her beloved musical instruments hurts too much.

She did not cry when she talked about how, as her condition worsened, she attended school less and less frequently, and how it stopped her from taking the science subjects she enjoyed, because she could not keep up.

Emma did not even cry when she spoke about how most of her friends were away at universities around the country now, and she was at home instead of being able to do the music and psychology degrees she dreamed of undertaking.

Emma's dad Julian said that without meaning any disrespect to old people, living with Emma was like living with a 90-year-old.

"Even running an errand for 10 minutes exhausts her and she needs to come back home for a rest," he said.

The Oranges said that though Emma's condition was hard on everyone, it had made them stronger as a family.

Last year, the family paid for a trip to Philadelphia, where Emma underwent an intensive 10-day ketamine infusion treatment as an out-patient.

Emma initially responded well to this treatment, but within months she was back to her pre-treatment state.

While she was in Philadelphia, Emma met Dr Schwartzman, a leading RSD researcher with more than 20 years experience in the field.

It was Dr Schwartzman who recommended Emma for a coma treatment research programme, for which her family said they would do anything to get her to the United States.

Ketamine is an anaesthetic that impedes the brain's sensory connection to the body.

The Oranges said a five-day coma-inducing dosage of ketamine might completely cure Emma's RSD.

It had worked in 50 per cent of cases so far.

A 50 per cent chance of their daughter getting her life back had been enough for the usually private family, who said they would re-mortgage their house if they needed to, to go public.

The $160,000 they must find includes the costs surrounding getting treatment and the three booster shots Emma would receive in New Zealand after the coma treatment.

It does not factor in the costs of complications that might lead to them having to stay in the US longer than planned, or the two months of unpaid leave Mr and Mrs Orange would take to be with their daughter.

"She has got to have a chance to live," Mr Orange said.

To learn more about Emma and her RSD, or to help by donating a brick to the supporters' wall, go to ihelpedemmaorange.webs.com.

- © Fairfax NZ News