When Ryan and Kristen Sheaff's four-year-old daughter Myla was diagnosed with cystic fibrosis about a year ago, they were told her life expectancy would be just 38 years of age.
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"There's nothing like being given an end date to your child's life when it's only just beginning," Ms Sheaff said.
"We decided that a cure for the disease was the only thing that we were going to accept for Myla's future, the future of many others living with CF everyday, and the future of the babies yet to be born."
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The couple, who are both police officers from Kiama on the NSW south coast, said they were simultaneously relieved and terrified to finally have a diagnosis for Myla, who had been plagued with digestive issues since she was born.
The family spent years visiting different paediatric specialists trying to find the reason for Myla's problems, and were eventually referred to a Sydney specialist who finally diagnosed her with a rare form of cystic fibrosis.
As they frantically searched for answers about her illness and its treatment, the couple learnt that there were about 3500 people in Australia with CF - mostly children due to the shortened life expectancy - and that there is no cure.
"Getting the diagnosis was pretty difficult and we were told basically not to Google it, because a lot of the information is a bit outdated and there's been a lot of progression in the treatment for cystic fibrosis," Mr Sheaff said.
"We know now that if someone was born in 1980 with CF, the life expectancy was barely adulthood, but there's been good news recently about a new style of drugs to treat it at the cellular level."
While they are not sure if these drugs will work for Myla, due to her rare form of disease, Mr Sheaff said she received regular treatment at a clinic in Sydney to help build her body's defenses against illnesses - like the common cold - which would make it even harder for her to breathe.
"Right now, we are really quite blessed that we don't have a day to day battle - Myla is independent and spirited - and we hope that will make her resilient as she grows up," Mr Sheaff said.
"She loves all the things that four-year-olds love to do - like playing at the park with her friends - and a good day for us is rolling down to Kendalls Beach and kids all running amok on the sand.
"Living in Kiama is about as good as it gets for CF - it's really temperate and the salty air is good for the lungs.
"Now that we're a little way in to her diagnosis, we feel like we're able to think outside of our own situation, so we want to try to do something positive for other people living with CF."
On Saturday, the couple's dream of a cure inched a little bit closer when they raised a whopping $47,400 for research charity Cure4CF at a fundraising lunch held in Wollongong.
Mr Sheaff said they had calculated that the money would fund a researcher - at a cost of $375 a day - for about six months.
They plan to make the event a yearly affair, and said they were grateful for an outpouring of support which has come from Illawarra residents and businesses.
"It's overwhelming and we are overjoyed to be able to feel like we are contribute significantly," Mr Sheaff said.
"It gives us hope that cure will be found, and this might mean the cure is found sooner and that's potentially less families that will go through what us and other families dealing with CF have been through."
The executive manager of Cure4CF, Suzy Dimaline said the organisation was grateful for the Sheaff family's efforts.
"Kristen and Ryan have done an incredible job in raising funds and awareness for our fight for a cure for cystic fibrosis,' she said.
"It's because of generous people like Kristen and Ryan, who roll up their sleeves and take the action necessary to pave a future free from this terrible disease, that we will be able to fund more cure focused research in 2022."
Kate McIlwain
For more than a decade, I've helped the Illawarra Mercury set the news agenda across the region. Currently I'm the paper's health reporter - covering the stories of Illawarra workers and residents in the wake of a global pandemic and at a time where our health systems are stretched to the limit.
For more than a decade, I've helped the Illawarra Mercury set the news agenda across the region. Currently I'm the paper's health reporter - covering the stories of Illawarra workers and residents in the wake of a global pandemic and at a time where our health systems are stretched to the limit.
