Indiana Hope Dawkins Is Five Years Old & She Needs Your Help
When Indiana Hope Dawkins was only a few weeks old she picked up a cold from her older brother.
At first her parents Meg and Josh weren't unduly worried but, as time went on and their tiny daughter wasn't getting any better, they paid a visit to their doctor.
It was to be the first of many; not only was their newborn diagnosed with cardiomyopathy - a condition in which the heart muscle becomes inflamed and enlarged - but they found a hole in her heart that needed to be closed.
When she was two months old, Indi underwent open heart surgery.
"She was very, very sick in hospital," Meg is saying now, five years on. "She had heart failure; we were lucky to still have her. It was pretty grim.
"[She spent] four months on a feeding tube and slowly got better."
But as time went on, Meg and Josh started to notice that there would be days when Indi seemed especially tired, days when she'd struggle to do simple things like hold her cup.
They were putting it down to their energetic toddler's habit of getting up super early - until, last October when, at the age of four, Indi suffered a massive seizure in the middle of the night.
"She was still conscious when we took her to the hospital," Meg explains. "That's when she was diagnosed with moyamoya disease, a brain disease.
"[It] causes strokes; she'd been having strokes her whole life, but it was only since the seizure that we knew."
It was then that a specialist told Meg and Josh that she thought their little girl might have a rare genetic condition called ACTA2, a mutation of one of her genes.
"She had every symptom," Meg, who is also mum to Israel, now seven, and Olivia, two, recalls. "I was glad we finally had an answer, but then it also dawns on you that it's forever.
"What does this mean for the rest of our lives?"
For Indi, being diagnosed with a genetic condition means numerous doctors appointments - a neurologist one week, a cardiologist the next - and medication to keep her seizures in check.
It's been an adjustment for the rest of the family, too.
"I worry about her. Because of her condition she can have a stroke at any minute," says Meg.
Not that Indi lets any of that get in her way; when one stroke caused her right hand to stop working, the determined kindergartener taught herself to write with her left.
She's also one of this year's Jeans for Genes ambassadors - and with a smile that big, it's no wonder why.
Now in its 24th year, Jeans for Genes has raised more than $67 million dollars for research into genetic diseases, birth defects and cancers at Children's Medical Research Institute (CMRI).
And with one in 20 Australians born with a birth defect or genetic disease, it is a much loved national fundraiser that means more to families like the Dawkins than we can imagine.
"No-one gets it so you're kind of living in this bubble with this genetic disease that's killing your kid and you want the world to know what's going on," Meg says. "It helps knowing there's research being done because otherwise there's no hope.
"How do we move forward?"
And that's where you come in. Every cent raised on Friday August 4, 2017 helps in discovering treatments and cures that will give every child the opportunity to live a long and healthy life.
For Indiana Hope Dawkins - and Meg - your participation is going to make a huge difference.
"There's research happening now that will help kids coming in the future," Meg says.
"Supporting Jeans for Genes means supporting the future generations."
For more information about how you can get involved, head to the Jeans for Genes website here.