Page 6 - Just Better Care Possible Magazine - Issue 4

A life committed to learning
A mother’s mission to provide the best life possible.
Taylor’s life changed seemingly overnight. One day he was playing his video games, the next he was experiencing terrifying hallucinations. Testing confirmed Taylor had Juvenile Batten disease; an unrelenting and cruel condition. Jo wanted to do everything in her power to help her son. So she started studying disability.
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
LEFT: TAYLOR AND HIS MUM JO.
RIGHT: TAYLOR & JUST BETTER CARE GIPPSLAND STAFF MEMBERS ALEXANDRA AND BONNIE.
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
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