There's a very special two-year-old helping to raise money for Jeans for Genes Day this year.
Emilia Lonsdale is one of three children featured in the Children's Medical Research Institute campaign for 2022.
Jeans for Genes Day is an annual fundraiser that encourages Aussies to donate funds to help research into birth defects and genetic disease in children.
Emilia, from Cobbitty in Sydney's southwest, has cystic fibrosis, a diagnosis which came as a shock to parents Jacqueline and Chris.
They knew something wasn't right from the start - she constantly fed, but milk went right through her and she struggled to gain weight.
She cried and struggled to sleep.
"I remember we were sitting on the couch and it was three in the morning, and we put her to bed about four or five times," Mr Lonsdale said.
"We thought, 'something's not right'. We had five weeks of that. No sleep. We were just getting through."
Then a nurse called with Emilia's newborn screening results. She was positive for CF. Neither parent knew they were a carrier, and their older siblings' children were born healthy.
"It was such a shock," Mrs Lonsdale said.
"When your child gets diagnosed, you also get a weird diagnosis at the same time.
"Everything you thought parenthood would be changes. I remember our nurse saying to us, 'just do us a favour, don't Google it, the life expectancy is so low'."
The Lonsdales adapted to waking up to medicine and physiotherapy, more medicine before every meal, using a nebuliser, and adjusting to a child who wasn't allowed to do all the everyday things most kids take for granted.
"Everything changed," Mr Lonsdale said.
"You think, 'we'll have a family and she'll grow up healthy, she'll have all the opportunities that life can offer'.
"It really hits home when you start getting information that, no, this is her every day. I think the first 10 months of this diagnosis was just us at home with Emilia, a child with a chronic lung condition in a pandemic that affects that lungs.
"Needless to say, we were a little stressed."
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Emilia's parents have struggled with the guilt of unknowingly passing along the gene that causes her illness.
Mr Lonsdale said, however, there is "no choice", and they must continue working through the physio, the nebuliser struggles and the isolation to make life as easy as possible for their daughter.
Associate Professor Leszek Lisowski from the Children's Medical Research Institute is working on the possibility of using gene therapy for CF, and has met with the Lonsdales.
It is hoped that one day a single injection could correct the gene mutation which causes cystic fibrosis.
That's why they're so excited to get behind Jeans for Genes Day this year.
"Jeans for Genes for us is hope," Mr Lonsdale said.
"The reason it's hope is because we're at a stage where research is making leaps and bounds, particularly in the genetic field.
"We're gone to the clinic, we've seen the researchers, you can see how far it's come even in the last 10 years.
"We want to work with Jeans for Genes so that genetic conditions can be a thing of the past."
The Children's Medical Research Institute says one in 20 children face a birth defect or genetic disease.
Medical research is moving faster than ever, but investment in the field is slower. But there is hope that one day the incurable can become curable.
Jeans for Genes Day is held on Friday, August 5.
