When Claire Hartley was born, parents Gwen and Scott were told she probably wouldn’t make it to her first birthday.
They were wrong.
Claire – now 14 – and her younger sister Lola, 9 were born with a rare genetic disorder called microcephaly.
The condition, which affects about 1 in 25,000 babies, slows development of the head and brain.
Gwen says despite their age strangers often mistake the girls for babies.
She says the pair weigh just 15 kilos between them and even thought they are small, they have big personalities.
The family celebrate Halloween
Writing on her blog, The Hartley Hooligans, Gwen says the family are blessed with two amazing daughters.
“I find time to share about my unique life raising a typical child & two profoundly disabled children, laughing all the way,” writes Gwen in her profile.
“We know that our family is definitely not ‘the norm’. We know that we are basically a walking freakshow when we go out in public, as we have not one tiny-headed, non-mobile, non-verbal dwarf, but TWO.
“We feel the pity and the judgment, we hear the comments, questions and remarks, and we see the stares, elbow nudging, and sheer surprise — and none of this matters to us, because we love our life. We love our three children, feel blessed by each unique child, and wouldn’t change one thing about our life or what we’ve been through. We only wish everyone could feel what we feel on a daily basis.”
“I am no less blessed by having two daughters with this condition than if they’d been born typical. I am just as proud of my girls as I am of our neurotypical son, Cal.”
Gwen says when the initial diagnosis came through she was heartbroken. But, she and husband Scott vowed to enjoy every moment they had with their children.
Claire and Lola
Gwen Hartley, we think you are our new hero.
