Jess and Blake 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 a 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 busyness 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 (carergateway.gov.au) after learning about the free support service especially for carers.
“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 explained.
Jess has also found purpose in creating her own small business, At Sadie’s Pace (atsadiespace.com.au), that she hopes will help other carers and people with disability to stay on top
of the admin of caring.
“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!” said Jess.
Jess had the idea for the planners in March 2022 and works on them whenever she can. Having the time to be a mum, carer and entrepreneur has been supported by Jess reaching out to Carer Gateway for help.
If you would like support and you care for a family member or friend with disability, mental illness, age or health issues, contact Carer Gateway on 1800 422 737.
