6-year-old Zoe Lush is one of the most fragile little girls in the entire world.
Brave Zoe suffers from a condition called Osteogenesis Imperfecta, meaning that her bones are so delicate that they can break at the slightest touch.
Her parents, Chelsea and Curtis Lush, first discovered there was something seriously wrong with Zoe during pregnancy.
Mum Chelsea explains, ‘we were doing a 4D ultrasound and they were able to see her multiple fractures that were fresh and healing already. She had broken ribs and her arms and legs were about 6 weeks behind what they should have been. So they told us that she had a really serious condition and she possibly wouldn’t make it until her birth date.’
‘We were told it was a 1 in 50,000 chance it would happen to her.’
‘There are a couple of different types of OI with different severities. Zoe was misdiagnosed with type 2, which is the most severe, but it ended up with her genetic results telling us she had type 3 OI which is still very severe.’
‘The specialist recommended, or suggested, that we could just terminate the pregnancy but it was more than that to us. It was our first child together.’
Unphazed by the diagnosis and determined not to give up on their unborn baby, Chelsea and Curtis made the decision to carry on with the pregnancy.
Zoe was born in October 2010, and as she was already suffering from so many broken bones it was a week before she was able to come home. But the hard part was far from over, as adjusting to caring for Zoe was tougher than her parents could ever have imagined.
During the first few months even simple tasks were a struggle. It took three people just to change her nappy and even then one of Zoe’s bones snapped as she wriggled unexpectedly on her changing mat.
Over the years Zoe has broken nearly every single bone in her body and undergone a huge amount of painful operations. One of the most major surgeries she endured was one to stop her spine from collapsing and internally decapitating her after the bones in her neck started to wear away.
Now Zoe is 6-years-old, and things are finally starting to get a little bit easier for her and her family.
Chelsea says, ‘Now with her being able to tell us ‘I just broke’ or ‘no you didn’t break me’ or ‘hold on, please don’t move me’.’
‘It’s so much easier,’ adds dad Curtis.
Thanks to regular physio Zoe’s muscles are strengthening to better protect her bones, meaning that she’s less likely to break them. And despite all the challenges she faces, Zoe has an infectiously positive personality and enjoys nothing more than playing and painting.
Chelsea says, ‘there’s no cure for Osteogenesis Imperfecta. For now I’m very grateful that there’s at least treatment because even 20 years ago there wasn’t as many.’
‘I would not change Zoe if I could take her OI back – I would never ever take it back. In the future I hope that Zoe has just as much opportunity as everybody else.’