June 9 is International Batten Disease Awareness Day – a day where you will find Instagram feeds full photos and videos of kids jumping to raise awareness for Batten Disease, a rare neurological degenerative disorder that mainly affects children. Bounce 4 Batten was launched by Peta Murchison, one of the most inspiring mums you will ever meet.
Peta is mum to Mia, age six, and Toby, age four. Mia was diagonsed with Batten Disease in 2013, (while they were living in Singapore), and sadly Mia can no longer walk, talk, eat or see. Even more heart-wrenching is the fact that currently there is no cure for this fatal condition.
Batten Disease is degenerative. Peta and her family have watched Mia regress: all of the milestones that she achieved as a toddler – singing, jumping, running – have faded away. But that hasn’t stopped Peta and her family loving every day they have together.
“Mia’s illness it has forced me to stare down my deepest fears and then just keep breathing,” says Peta. She believes that life can be heartbreakingly sad, but still be joyful. She believes she has become a more accepting, loving, patient, kind and honest person with Mia’s diagnosis. She has let go of the what-ifs, whys, and self-blame and focuses on the positives – like the joy Mia gets from her weekly horse ride, or the smile on Mia’s face when they turn up the music loudly and dance around, singing loudly.
Peta is a real demonstration that life is bittersweet, and we all get to choose what to focus on. She is totally focused on the present, the happy moments and the simple joys of life. She thoroughly loves her kids.
Peta listens and learns from both Mia and Toby – from the heartbreaking questions about death that come from Toby: “When I am six, after my teeth fall out, will I die like Mia?” – to the tender loving spirit shown by Mia. The resilience, patience and calmness she shows. The kindness, empathy and acceptance that Mia teaches everyone.
If you get the chance to meet Peta and Mia, you will be blown away by their spirit, energy and attitude.
If you don’t – you can still get involved in raising awareness for Batten Disease – and hopefully one day, there will be a cure. Support the cause by taking a photo of you and your kids bouncing, share it on social media and add the hashtag #bounce4batten. Because sometimes the only thing to do is find the silver lining, and bounce to celebrate the joy life brings.
Visit www.bounce4batten to find out more, and to support ongoing research.
Photography courtesy of Rohan Rees and Peta Murchison.
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