Finding the right person to provide her son with the unique care and support he needs is incredibly important to Jo. Her adult son Taylor has Juvenile Neuronal Ceroid Lipofuscinosis, also known as Juvenile Batten disease. It is an extremely rare and fatal neurodegenerative disease which occurs during childhood.

It causes hallucinations, brings on anxiety and mood swings, and often results in nocturnal behaviour. His high care needs means Jo needs to be available to her son at all hours of the day.

Taylor’s symptoms first began at age four. Jo and her mother suspected Taylor had vision impairment, as he had difficulty focusing. By the age of six, Taylor lost his vision completely and he required round the clock care by age 12.

Each fortnight, Jo and Taylor would travel from their home in Rosedale in regional Victoria to the Vision Australia School in Melbourne. While attending a session in 2005, Taylor experienced a convulsive seizure and was transported to the emergency department of a nearby hospital.

Following some tests, Taylor was referred to Paediatric Neurologist Dr Mary- Anne Lobo, who gave Taylor’s diagnosis. It was then the hallucinations started. Watching her son’s life change so dramatically, Jo wanted to do everything in her power to help.

She wanted to gain skills which would enable her to care and support him herself and, most importantly, make every minute together count. First, she enrolled in and successfully completed an Introduction to Aged Care and Disability course. Within a week of completing the course, she was employed as a disability support worker. In 2012, she completed a Certificate Four in Disability.

“Taylor’s condition is degenerative and does not manifest the same for each person, which has meant introducing and adjusting to changes when needed.

“A daily goal of comfort and happiness for Taylor may not seem enough to others but after everything he has endured throughout his life, it would be paradise.

“Supported, Taylor still loves to play his video games; he also likes to listen to other people playing them for him. Taylor is a romantic at heart, and enjoys listening to and singing along to love ballads,” Jo said.

After a period away, Jo and Taylor recently returned to living in Rosedale with Jo’s mother. Anxiety has had a significant effect on Taylor’s health; Jo hopes by returning home to a place he once loved will assist in alleviating these anxieties, allowing him to enjoy each day rather than fearing them.

Returning to Rosedale has also led to more time enjoyed with family, and access to a new support system. Jo recently approached Just Better Care Gippsland, based in Rosedale, to manage and provide Taylor’s support. She will continue to manage Taylor’s National Disability Insurance Scheme funding, but the extra support will enable her to focus on spending quality time with her son.

“Taylor has just celebrated his 25^th birthday. Most children diagnosed with Juvenile Batten disease don’t often experience the lifespan that Taylor has,” said Melissa Bastian, owner of Just Better Care Gippsland.

“Since moving back to the area, at Jo’s suggestion, we arranged for one of Taylor’s Community Support Professionals from Melbourne to join us. He initially conducted extensive shadowing with the new team to ensure Taylor received the right care and he is also working weekends. Jo is an amazing mum who makes every effort to give him the best life possible.”

This is a story from our latest issue of Possible, read more here.