When Lauren began vomiting after a fall, her parents rushed her to their local doctor in Queensland, fearing a concussion. To the family’s surprise, it was a follow-up visit to the optometrist that resulted in a life-changing diagnosis – myasthenia gravis (MG).
MG is a rare autoimmune disorder that disrupts communication between the nerves and the muscles, causing debilitating weakness. For Lauren, these symptoms began when she was just a little baby and continued to worsen over time.
“We got this diagnosis confirmed because of the changes in the behaviour in her eyes. But then it progressed quite rapidly. We thought it was just ocular, but it turned out to be generalised. This meant that her whole body was affected – from her smile to even sometimes just falling over and collapsing,” Erin, Lauren’s mum shared.
Lauren immediately started a treatment plan, involving infusions and highly invasive surgery at just three and a half years of age. Despite all of this, Lauren and her family did not see the improvement for which they had hoped.
Living rurally and with their daughter’s condition worsening, Lauren and her family were able to seek support from anywhere in Australia. It was a referral to Associate Professor Andrew Kornberg at The Royal Children’s Hospital (RCH) in Melbourne that changed their lives.
“When we first went to the appointment, Andrew spent an hour and a half with us, unpacking everything, and creating a bond with Lauren. That connection made it easy for her to find her voice,” Erin shared. “That was the biggest thing for Lauren because her condition is episodic and hard to understand. She might look fine on the outside, but she is not always okay,” she continued.
Now, after a decade of receiving specialised, world-class care at the RCH, Lauren is stronger than ever, learning how to self-manage her condition and getting back to what she loves doing most.
“When I was younger, I used to dance, but I didn’t keep up with it just because of the fatigue. But I was able to get back into it a few years ago,” Lauren shared.
Andrew’s early advice around centering Lauren’s voice has been transformative for the entire family and it has helped them to reshape how they approach her medical care.
“The greatest piece of advice that Andrew has given us is that we were never to stop Lauren from doing anything, but were to catch her if she fell,” Erin said.
Today, Lauren is thriving, with the impact of her condition minimised to her eyes. Having experienced first-hand the life-changing impact of care at the RCH, Lauren and her family are once again throwing their full support behind Andrew and his incredible mission.
“We’ve known Andrew for so long, and to me, this journey is such a full circle moment. Because I was part of Fly for the Kids in 2017 when I was in Year One, and now I’m in Year 10 and am able to see it all happen again,” Lauren shared.
Lauren during the first Fly for the Kids campaign in 2017
“I think this mission is really important because it helps raise money for the facilities and medical equipment that help make the RCH world-class. So, to anyone that’s on the fence about supporting it, I think they really should,” she continued.
Jump on board and support Fly for the Kids in any way you can — host a fundraiser, donate (big or small), or simply spread the word. To learn more, go to flyforthekids.org.au.