15/05/2022
You might have noticed that this year’s Crystals in Kellerberrin is raising funds for . What you might not know is what Batten disease is or why I am using this event to raise funds and awareness.
This is my niece, Hollie. She’s 7 years old, loves horses, the movie Grease, swimming, her dog Mako and always wants to be doing what her big sister Maddi is.
Hollie is fighting Batten disease, a rare and degenerative genetic disorder, also known as childhood dementia. Batten disease is robbing Hollie of her childhood. Her ability to see, walk, communicate, attend school, learn with her peers, participate in family activities - all of this is impacted every single day.
Hollie is one of just two children living with Batten Disease CLN5 in Australia (CLN5 being the specific gene that causes the disorder). She's also one of approximately 80 across the globe. Because Batten disease is rare, not many people know about it. And, tragically, there isn’t enough “profit” in finding treatments or a cure because so few children are suffering with it. This makes research so vital to kids like Hollie. Hollie, her mum, dad and sister are currently in the United States awaiting approval to participate in the first ever clinical trial for Batten CLN5.
The Batten Disease Support and Research Association of Australia provides support for families impacted by Batten disease and advocate for research that will hopefully one day mean no child has to be given the diagnosis with their family told “there’s really nothing we can do”.
All funds raised at our event will go to BDSRA to support their work.
https://www.facebook.com/bdsraaustralia/
