Mum refuses to let 'price tag' hold her son back
JACKSON Hislop was born 15 weeks premature and spent the first 132 days of his life in intensive care, but that was just the beginning of his fight.
The "cheeky little man" who draws people in with his big blue eyes, contagious smile and massive personalty, has been diagnosed with a debilitating disease.
His mum, Kristy Lea Hislop, said Jackson's premature birth and difficult early start left him with quadriplegic dystonic cerebral palsy and a hearing impairment.
"Just the ability to crawl, sit, stand, walk, talk and feed himself will be a fight to achieve," she said.
"Jack experiences fluctuating tone in his body and can go from floppy and unable to hold his head up to completely stiff and experiencing painful muscle spasms in seconds.
"Doctors are understandably hesitant to guess exactly what Jack's capabilities will be but there is one word that keeps being brought to our attention - neuroplasticity.
"This means before Jackson reaches the age of five we have a small window of time to retrain the pathways in his brain with therapy and the help of supportive equipment."
Ms Hislop said the tiniest of gains made the world of differnce for Jackson's quality of life, but the gear the family needed came with a hefty price tag.
The NDIS funding available to them would go towards a therapy chair that costs $10,000, but there would not be enough left over for other specialist gear and therapy sessions that can drastically improve the lives of people with the incurable condition.
"We can't let a ridiculous price tag stop us in our paths," Ms Hislop said.
"We will explore every avenue while of course maintaining a balance and make sure just being a kid comes first."
Jackson's family has started a GoFundMe page taking contributions to help the one-year-old boy make as many gains as he can over the next four years, after that time doctors have told the family the window to retrain pathways in Jackson's brain will close.
To find out more about Jackson's journey visit the GoFundMe page.