Bounce 4 Battens - a cause worth knowing about & bouncing for!
When I think about how strong Peta and her family are - the daily struggles they cherish because it means they have one more day with their daughter Mia is nothing short of awe inspiring and heart breaking all at the same time. I got to know about Mia's story through my sister in law - who is best friends with Mia's mother - Peta Murchison. Mia was diagnosed with a rare genetic disease called Batten Disease that is incurable & ultimately fatal.
I encourage you all to listen to her TED talk about dealing with the grief of knowing you will out live your beautiful daughter and reading her story in the recent article that came out just before the annual Bounce for Batten social media campaign that aims to grow awareness and support for the Batten sufferers.
The TED talk.
What living with a dying child taught this mum about living
By Jacinta Tynan
Peta Murchison speaking to a packed and teary Opera House at TEDx last year about the day her little girl will die. There was a time when she thought Mia would live forever, or at least way beyond her.
There was also a time when she wouldn't have imagined she'd have the courage, or the cause, to divulge her most intimate fears and realisations to some 40,000 people. But that was before everything changed, before her reality slid into unreality, when her seemingly normal family of four was dealt a random genetic swipe with the diagnosis of her now seven-year-old daughter, Mia, with Batten disease, a rare genetic neurodegenerative condition which is incurable and ultimately fatal.
Save a miracle, Mia will not live to be a teenager.
Until the age of three, there was no way of knowing anything was amiss. Mia was talking and, her mum says, her comprehension was "beautiful". She loved riding her bike and playing with her younger brother, Toby.
"She was hilarious", says Peta. "She just made us laugh and she was very independent and just knew what she wanted. She wasn't a people pleaser at all. She would boss us all around. She was a bundle of energy and very active and affectionate."
Mia had her first seizure at three and began "regressing", which eventually lead to the diagnosis of late infantile Batten disease or Neuronal Ceroid Lipofuscinoses (LINCL), which affects one in 100,000 children and of which both Peta and her husband, Hamish, were unwitting carriers.
Continue to the full article -
Peta Murchison has established the #Bounce4Batten initiative to raise awareness and funds for Batten Disease aiming to break the world record with images of people bouncing. Find out more at www.bounce4batten.com.au
(NB All donations through www.bounce4batten.com.au are directed to the national registered charity Batten Disease Support and Research Association (BDSRA) with the intent to help find a cure through supporting research).