A mother-of-two who was told she would never have children because of her crippling lung condition has revealed the exhausting routine that keeps her strong enough to care for her young family.
Emmah Money, 33, is one of roughly 3,500 Australians living with cystic fibrosis, a genetic disorder that causes cells to produce a thick mucus which damages the lungs and digestive tract so severely, the average life expectancy is just 38 years old.
The motivational speaker, who raises daughter Ayvah, eight, and son Logan, six, in Adelaide, South Australia, could be described as a walking miracle after doctors warned her parents she was unlikely to live past the age of five.
Ms Money defied the odds and then some by becoming a mother, building a loyal community on social media and receiving the SA Local Hero award in the 2020 Australian of The Year for her work in fundraising for cystic fibrosis.
But her condition means life is far from easy.
Emmah Money was told she would never have children due her cystic fibrosis; she defied doctors’ predictions to welcome daughter Ayvah (right) and son Logan (left)
Ms Money (pictured) from Adelaide, SA, could be described as a walking miracle after doctors warned her parents she was unlikely to live past the age of five
Ms Money is on a constant stream of antibiotics, has physiotherapy three times a day and takes more than 30 pancreatic enzymes with her daily meals to help digestion.
She also undergoes intravenous antibiotic therapy two to three times a year, which leaves her attached to a pump 24 hours a day for three weeks.
‘Being a mum with CF is really indescribable. It’s extremely hard work, it’s exhausting but I wouldn’t change it for the world,’ Ms Money told Daily Mail Australia.
‘[Treatment] is just a part of who I am and what I do.’
Despite being told it was highly improbable she would conceive, Ms Money refused to be discouraged and after 12 months of ‘trying’, she was overjoyed to learn she had become pregnant naturally.
Pregnancy suited her, to the point her lung function actually increased.
The good with the bad: Ms Money (left and right) is on a constant steam of antibiotics, has physiotherapy three times a day and takes more than 30 pancreatic enzymes with her daily meals to help digestion
Ms Money (pictured with daughter Ayvah and son Logan) says being a mum with CF is ‘indescribable’ – but wouldn’t change it for the world
Ms Money (pictured) says treatment is simply ‘part of who she is’
‘I was the healthiest I had been in years whilst pregnant with my daughter, I remember wearing high heel stilettos at 37 weeks!’ Ms Money recalled.
After delivering daughter Ayvah safe and well, she started the Facebook community pages, CF Mummy, in a bid to show other young women with cystic fibrosis that their condition does not preclude them from having kids.
‘I wanted to create something real and authentic, to share the highs and lows and be a resource for other women,’ she said.
Ms Money’s advocacy and leadership was evident from a young age.
As a teenager, she wrote a book to document her daily battle with cystic fibrosis.
‘The Words Inside’ was published by Random House and quickly propelled her into the national spot light.
Ms Money (pictured with ‘miracle’ daughter Ayvah) has written a book about living with cystic fibrosis and now works as a motivational speaker
After delivering daughter Ayvah safe and well, Ms Money (pictured during a lung function test) started the Facebook community pages, CF Mummy, in a bid to show other young women with cystic fibrosis that their condition does not preclude them from having kids
Fame led Ms Money to become an ambassador for cystic fibrosis in Australia, a role which has seen her travel to the US to speak at The One Young World conference in front of VIPs including Sir Bob Geldof and Jamie Oliver.
Ms Money’s condition is not yet severe enough to require a lung transplant, something she counts as a blessing having witnessed many friends with CF lose their lives not long after transplant.
‘It scares me deeply, I hope to never need one,’ she said.
Ms Money is hopeful that while a cure for CF remains a distant dream, advancements in treatment and groundbreaking research done in recent years will help to slow the deterioration of her condition.
One thing that would drastically improve her lung function is Trikafta, a breakthrough therapy drug manufactured by Vertex that has been shown to effectively thin mucus in the lungs of 90 percent of CF patients.
Ms Money (pictured) is hopeful that while a cure for CF remains a distant dream, advancements in treatment and groundbreaking research done in recent years will help to slow the deterioration of her condition
But because it has not yet been approved for state funding in Australia, the drug currently costs patients nearly $300,000 each year – an eye-watering sum that puts the treatment out of reach for the vast majority of people.
The drug is already available and reimbursed in 17 countries including Denmark, Finland, Germany, Ireland, Switzerland and the UK, making its inaccessibility in Australia all the more frustrating.
Since June, four new agreements have been signed with drug administrations in France, Italy, Austria and the Czech Republic.
Ms Money says she will ‘fight until her last breath’ to ensure Trikafta is made available to those who need it.
Ms Money (pictured) says she will ‘fight until her last breath’ to ensure Trikafta is made available to those who need it
She was instrumental in the campaign for the subsidisation of Orkambi, a $250,000 per year drug that was given the green light for the Pharmaceutical Benefits Scheme (PBS) in August 2018.
Following a lengthy battle between advocacy groups and the federal government, the cost to patients was reduced to just over $6 a month.
A passionate campaigner for affordable access to healthcare, Ms Money is now lobbying the Australian Department of Health to do the same for Trikafta.
The drug was last assessed in March at a meeting of the Pharmaceutical Benefits Advisory Committee (PBAC), an independent body of doctors, economists and health experts who recommend new drugs for funding.
But no decision was made and negotiations are still playing out while desperately ill Australians become sicker.
Ms Money (pictured) believes immediate compassionate access should be granted to all eligible patients while discussions over pricing continue
The PBAC deferred making a recommendation about listing Trikafta on the PBS at its most recent meeting in May to allow further engagement with Vertex Pharmaceuticals.
The next update from the PBAC is due in August.
Ms Money believes immediate compassionate access should be granted to all eligible patients while discussions over pricing continue.
‘I have no words for the anger I feel that there is a drug available at such a ridiculous cost, it is unreachable to many within our community,’ she said.
‘It’s like the government and drug company are holding a gun at us, with their finger over the trigger. By saying no to access, they are pulling the trigger.’
For more information on cystic fibrosis, treatment and clinical trials, please visit Cystic Fibrosis Australia.