Published May 02 2023
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 pre-schoolers 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. She learned about the service a couple of years ago and also found support with trying a ketogenic diet for Sadie’s epilepsy helpful.
“I’ve really grown into my role of mum and carer. I’ve learned to let go of the pressure of the high standards I set myself as a mum and relaxed into utilising things like television, snacks and easy meals so that I can get a little break – things that previously would’ve had me feeling guilty.”
Jess has also found purpose in creating her own small business, At Sadie’s Pace, that she hopes will help other carers and people with disability to stay on top of the admin of caring.
At Sadie’s Pace is a range of premium planners and stationery for carers and people with disability. Jess couldn’t find the kind of hard copy planner she wanted to help her keep track of Sadie’s appointments and medications, so she created her own.
“I had so much paperwork and so many different planners, and I just wanted it all in one place. It’s come from my experience but hopefully it helps others. I’ll definitely use it myself!” says Jess.
Jess had the idea for the planners in March 2022 and works on them whenever she can. They’re undated so can be started anytime and include features an episode diary, medication and sickness charts, therapy checklists, affirmations and even sticker pages!
She enjoys building her online identity and community as a ‘medical mum’ and has recently allowed herself to relax into spending time with her girls as a friend and a mum.
“I'm a lot more present with them than I used to be. We have fun together, and I don't feel as alone. It’s so great.”
If you would like to find out more about the journal, visit atsadiespace.com.au