On his 4th birthday, Jacci received the devastating news that her son Brady had Batten’s Disease – a fatal, inherited disorder of the nervous system. Brady’s condition was progressing quickly. She learned that they would begin to see more and more frequent seizures (he was already having a dozen or more grand mals a day), and rob Brady of his ability to walk, to talk, his cognitive function and eventually his life. And while within a year, he couldn’t communicate like he once did, he loved his movies and would light up at certain parts, and laugh – which Jacci says are the times she lived for…those and all the cuddles. And despite how much Jacci loved spending those precious moments with her little boy, her days started at 4 am some mornings and went until 8 pm that evening. There was something to be done medically for Brady every hour, and it felt like caring for him was around the clock most days.
Jacci says Rotary Flames House is a godsend to their family – she could take Brady there for overnight stays and take a break herself. She says the staff there loved him as much as she does and they’re the only people – besides her Mum – she felt confident leaving him with. Jacci is grateful to all of Brady’s caregivers, his doctors, nurses and dieticians – they were a lifeline to them and available 24/7.
When it came clear that Brady’s life was nearing its end, they moved in to Rotary Flames House for palliative, and that’s where they stayed for three months while Brady’s body would show signs of shutting down and then rally, over and over again. Brady passed away on New Year’s Day, 2016, peacefully in the night in his mum’s arms. The love, support and care Brady received at Rotary Flames House allowed Jacci to just be Mum and not just Brady’s nurse. She says her only job was to love her son and that it was a treasured time only possible thanks to Rotary Flames House.