Cystic fibrosis advocate and Australian of the Year award-winner Emmah Money on defying expectations – ABC News

Updated February 28, 2020 11:32:05

"This attitude of having life expectancy never sat right with me," Emmah Money says. "And I never saw that as a reason not to have a baby."

Emmah has cystic fibrosis (CF), a hereditary illness that leaves people with an average 37-year life expectancy.

Born in 1987, her biological parents were told she would not even survive childhood and subsequently put her up for adoption.

But the infant had a glint in her eye suggesting she wanted to stick around and, at the age of 32 with a list of achievements behind her, was named South Australia's Local Hero during the 2020 Australian of the Year Awards in January.

It followed a hard-fought role in getting the critical CF drug, Orkambi, listed on Australia's Pharmaceutical Benefits Scheme, and launching CF Mummy, a social media brand supporting those with CF who want to have babies.

"I started CF Mummy when I fell pregnant with my daughter seven years ago," Emmah said.

"Wanting to have kids was almost unheard of because the attitude was: 'Why would you have a baby when you know you're going to be dead, or you're only going to make it to 30 if you're lucky?'.

"There was nothing that was positively supportive."

Emmah also talks in schools about overcoming obstacles such as bullying and depression subjects that resonate with her after repeatedly having her education and social development interrupted by illness and infection.

"One year I spent 16 weeks hospitalised and I was in primary school where you can imagine kids were finding their friends," she said.

"So having to be absent and then trying to come back and sit in on a social level, I did struggle."

One thing that makes CF difficult to understand for many people is it is an invisible disorder that damages the lungs, digestive system, and some internal organs, meaning its sufferers often appear no different to anybody else.

In high school, Emmah would have her school work sent to her during repeated hospital stays, meaning she could appear like she was getting special treatment for an "invisible illness".

"I fell very unwell when I got into high school and I was bullied very badly throughout," Emmah said.

"Everyone started getting their driver's licence and I would have girls follow me home and taunt me; they threw eggs on our loungeroom window.

"When you sort of stand out for whatever reason, it makes you a target."

At 16, Emmah was recognised for her work as a national youth ambassador for CF by Girlfriend Magazine, which awarded her Girlfriend of the Year.

It happened the same year that two friends she had grown up with died as a result of CF.

"So here's people at school giving me grief, and I remember thinking, 'God, if only you knew what I've had to go through'," Emmah said.

Her troubles were amplified when the Make a Wish Foundation set up a chance for Emmah to knock about with professional surfers Layne Beachley and Kelly Slater in Year 11, an adventure that resulted in Emmah being contracted to do some modelling for a surfwear label.

"I'd started a new school and was modelling surfwear clothing my photo was on a billboard and girls didn't like that."

"The sad thing is, being bullied in general will always be a part of your personal development, but I am who I am because I was bullied, to an extent."

Thanks to the recognition she received, Emmah had an autobiographical book, entitled The Words Inside, published when she was 17.

Another significant occasion that took place just before her 17th birthday was meeting her biological parents by chance, two people who believed she had passed away.

Emmah described them as "lovely people" but did not believe she would be here today if they had kept her.

"They were told, 'This baby will die', and they were not in a position to mentally be strong for me and give me the life I needed," Emmah said.

"They wanted to give me to a family that could actually give me the life I deserved."

She said the parents who brought her up were "wonderful and taught me many things".

"My mum told me they wanted a baby with special needs, so they went through a special needs adoption course," she said.

"Dad's a paraplegic but he represented Australia in the Seoul Paralympics in weightlifting in 1988.

"He remembers when they finally got me, he would stay up at night watching me sleeping in the bassinet because he was just in disbelief.

"They're amazing, and I look at the foundations they've given me: Dad's a paraplegic and he could have been depressed about it, but he's made the most of this life."

Emmah has a new-found confidence in managing her illness thanks to the Australian Government's 2018 decision to list the drug, Orkambi, on the Pharmaceutical Benefit Scheme after repeatedly rejecting it.

Until that moment, it cost up to $250,000 a year to access the drug, leaving it out of reach for most CF sufferers, including Emmah.

Australians can now access it for a maximum of $40.30 per script although there has been some controversy around access and who is entitled to it.

"There was probably three years of petitions, multiple applications and forms we'd submit to be reviewed by the Government, and I was also involved with quite a few protests," Emmah said.

"There was one in particular in Adelaide with some of the CF community members, and we walked through the streets just to get our voices heard.

"Because we got recognised on the news, it was louder than the petition itself."

Emmah started taking Orkambi within weeks of it being available in mid 2018, and while she endured the initial "rollercoaster" of side effects, such as tightness in her chest and migraines, she persisted and attributes the drug for getting her through a flu infection last year.

"The flu, for CF people, can kill you," Emmah explained.

"Because of Orkambi, that flu did not deteriorate my lungs or my health, and it allowed me to be stable."

A friend who was in hospital at the same time as her, however, was not so lucky.

Emmah spoke at his funeral in July.

"There's still a lot of suffering that goes on, and while Orkambi was a great win for quite a lot of us, it's not a cure," she said.

As an ambassador for Cure4CF, Emmah is organising a fundraiser for the CF national awareness month on May 29, or 65 Roses Day.

Her background and a "gift for the gab" has led Emmah to remain an ongoing advocate for CF sufferers, as well as being an "empowerment speaker".

She is working on a second autobiography about going through pregnancy and motherhood with CF and hopes to release a children's book later this year.

The defiance that pulled her through childhood is as strong as ever and she admits she never does anything by halves.

"When I was a child, I never had anybody with CF I could live up to because there wasn't anybody who lived long enough," Emmah said.

"The life expectancy has changed but for a very long time the number was 37, but I'm now 32 years old and I'm still going with my original lungs and have so much to give to this world."

Topics:government-and-politics,community-and-society,health,health-administration,health-policy,adelaide-5000,sa

First posted February 28, 2020 08:45:40

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Cystic fibrosis advocate and Australian of the Year award-winner Emmah Money on defying expectations - ABC News