In a remote Aboriginal community of fewer than 500 people in the far north of Western Australia, seven-year-old Kelvina Benny is a long way from the specialised medical support she sometimes needs.
Kelvina was born with a brain tumour, which caused developmental delays affecting her ability to walk and speak. She is non-verbal and needs a wheelchair to move around. She also has difficulty swallowing and requires percutaneous endoscopic gastrostomy (PEG) feeding.
“She gets angry and frustrated sometimes but she is a happy child,” said Kelvina’s mum Hazel Yamalulu, 41.
“She loves music, any music - especially rap - and sometimes she dances in her wheelchair, she moves her arms and legs around. You know when she’s happy.”
Kelvina lives with her family in the Yungngora community on Noonkanbah Station. The community represents the cultural groups of Walmajarri, Nyikina annd Mangala and lies about 165km south east of Fitzroy Crossing, a small town in the remote Kimberley region.
Kelvina needs round the clock care. Hazel cares for her fulltime, and twice a year, the family travels more than 2500 kms to Perth for Kelvina’s medical checkups and specialised tests.
But since Kelvina joined the NDIS two years ago, Kelvina’s life has improved and support has been available much closer to home.
Kimberley region NDIS provider Far North Community Services has been helping Kelvina to access the community, receive therapy services, and pursue her goals through her NDIS plan.
The provider takes Kelvina out for weekly trips to the Fitzroy River, which Hazel says she enjoys. Far North also helps out the family with attending appointments and going shopping.
“We don’t have our own transport, so it’s really good getting community support so we can get out of the house to do grocery shopping and go to check-up appointments for Kelvina,” said Hazel. “Without this life would be more stressful.”
Far North Fitzroy Crossing Service Delivery Coordinator, Donna Butler says Kelvina’s goal is to build on her mobility and increase her independence so she can attend school regularly and increase her social participation.
To help Kelvina on that path, Far North therapists recently professionally fit Kelvina with a custom-modified wheelchair and standing frame.
“The therapists came to fit a special wheelchair for Kelvina with a part for her PEG feed and this makes it a lot easier for Kelvina,’ said Hazel. ‘She also has a standing frame and physio toys and Far North do regular check-up appointments. It’s very helpful for her.”
Far North’s therapy team now flies in to Fitzroy Crossing from Broome for regular service visits.
“The introduction of regular service flights to the area has meant the Far North therapy team is able to spend more time in the Valley and provide more regular therapy services to people living in that community, including Kelvina,” said Donna.
Hazel says Kelvina enjoys her weekly outings with the provider to the Fitzroy River.
“Kelvina enjoys going to look at the river and see the horses at the old mission site and listening to music,” she said.