GP mum Karen Crawley nominated for Pride of Australia medal for her work raising awareness around mitochondrial disease

ALONG with looking after her daughter, Kara, now 15, Karen Crawley has made it her mission to ensure people, ­especially doctors, are aware of mitochondrial disease.

Karen and Craig Crawley and their children, Kara (the older girl that is unwell, and the one with "red" hair), Braden is my son, and the younger girl is Samantha (blonde hair colour)

Karen Crawley’s daughter is slipping away before her eyes.

Until she was about seven, Kara was a bright, ­enthusiastic child. But in the eight years since, she has had dozens of strokes, her hearing and eyesight have deteriorated, and she has ­developed dementia.

Mrs Crawley is a GP, but even she didn’t realise Kara had mitochondrial disease, the second-most commonly diagnosed serious genetic disease after cystic fibrosis.

In fact, she’d never heard of it. There was nothing in her textbooks. She didn’t know she carried the gene, and that all of her three children had inherited it.

So, along with looking after Kara, now 15, Mrs Crawley has made it her mission to ensure people, ­especially doctors, are aware of “mito”.

Has someone inspired you through their dedication, initiative, courage or charity? They could be a neighbour, friend or colleague.

Show them how much their actions matter to you by nominating them for the prestigious Pride of Australia Medal.

NOMINATE THEM RIGHT NOW

She spends about 20 to 30 hours a week doing voluntary work for the Australian Mitochondrial Disease Foundation, answering phone calls and emails, writing up information, talking to conferences and raising awareness among doctors.

For this work, Karen has been nominated for the Pride of Australia Medal in the category of courage.

But sometimes, her work has to be put on hold for Kara, whose condition is worsening. Some days, she appears to be getting better. They feel like they are winning, then she slips again.

Sometimes she still has lucid moments, but they can be difficult, too. She’ll want to go swimming, or play with her siblings, but tires herself out. The next morning, she will have another stroke.

“At times she thinks she’s a normal 15-year-old, but has the demented mind of an 85-year-old,” Mrs Crawley said. “She can’t process things, she can’t understand things. She wants to play football with her friends.”

The Crawleys’ son is 14 and has symptoms, too, ­although they are not as ­severe as Kara’s. “There is a very strong chance he will develop it,” she said. “He might present in his 20s or 30s with a stroke. It’s a ticking time bomb situation.”

Karen Crawley didn’t even know she carries the gene.

The symptoms are least severe in their youngest daughter, aged eight.

“She’s my 100 percentile child, she’s very active, does lots of things, she’s out and about, my little goer,” Mrs Crawley said.

It’s difficult to imagine how the family copes.

“You do struggle, and sometimes you have to curl up in a ball and cry. You have to let it out,” she said. “But we have two other kids, we have to keep going.”

For more information: http://www.amdf.org.au.