It’s been eight years since Barbara Sass has had a full meal.
The Kings Park woman has a rare condition called gastroparesis – a disorder in which the stomach muscles are paralysed and unable to process food.
A hickman line through her chest transports liquids and medication into her body, but her terminal condition means the 21-year-old weighs 27 kilograms and is experiencing gradual organ failure.
“My stomach doesn’t empty, so if I try and eat or drink anything, I vomit everything I ingest up – including food and water, even extra saliva,” Barbara told
“When I was younger, I had bowel issues and my gastroparesis symptoms started when I was 12. I would eat a piece of food and couldn’t hold anything down.
“Often I was told that I have bulimia and that I was making myself vomit, but I wasn’t. I want to eat, I don’t want to be sick, but there is no cure.”
Intestinal failure, functional gut syndrome and severe malnutrition as well as social ostracisation and depression, are the harsh realities of her illness.
Barbara’s battles don’t stop there.
She needs expensive specialised equipment and her condition does not qualify for funding under the National Disability Insurance Scheme (NDIS).
She and her mother, Frances, Barbara’s full-time carer, live in transitional housing and both are on disability pensions.
While they receive some support through the NDIS for mental health issues, the funding doesn’t stretch to cover a wheelchair, commode and a hospital-style bed that Barbara needs.
Yarraville nurse Bianca Bertolini, who has been helping Barbara navigate health funding streams, has been raising $200 a fortnight needed to hire equipment with the help of friends and family – and sometimes from her own pocket.
“There’s no place that seems to help out people that don’t fall under NDIS,” Ms Bertolini said.
“The assistance that Barbara has received through the scheme is specifically to pay for someone to come and counsel her and someone to wash her or take her shopping.”
Ms Bertolini has set up a crowdfunding campaign that has so far raised $2000.
“I do it for her,” Ms Bertolini said. “It gets hard at times, but when I get frustrated, I think of Barbara and it keeps me going.”