Jess ’ s story : Creating for Carers
I was told at 16 that I would probably never birth children of my own , yet at 25 we announced our beautiful healthy girl had been born and I became known as Mumma .
Jess Sculley and Blake Caspersz are proud parents to two young daughters . Their oldest , Sadie , has GNB1 syndrome , epilepsy and autism . Jess is Sadie ’ s main carer and has been inspired to launch a range of planners and stationery for carers . GNB1 Syndrome is a rare genetic mutation that was discovered in 2016 . In four-year-old Sadie ’ s case , having GNB1 syndrome means global developmental delay , and hundreds of epilepsy seizures a day . As full-time mum to Sadie and almost two-year-old Pacie ( who is neurotypical ) and a full-time disability carer to Sadie , Jess doesn ’ t get much time out . Life is full of the busy-ness of primary parenting two preschoolers and Sadie ’ s additional care needs and medical appointments .
Finding ways to get a bit of “ me time ” is one of the outcomes Jess values from her experience of carer gateway after learning about the service a couple of years ago . “ I ’ ve really grown into my role of mum and carer . I ’ ve learned
“ I ’ ve really grown into my role of mum and carer .“
8 | The Caring Way