For Brett Stace, the reality of his son Sebastian’s condition sunk in when the conversation turned to starting school.
“His doctor said that by the time he’s ready for kindergarten, we’ll probably need a wheelchair or a walking frame for him,” Brett said.
“That’s when it really hit me.”
Sebastian was two years old when he was diagnosed with spastic diplegia, a form of cerebral palsy highlighted by extreme stiffness in the lower body muscles.
Now aged four, Sebastian’s symptoms include poor balance, speech issues and toe walking.
Left untreated, the symptoms of spastic diplegia are likely to worsen throughout Sebastian’s life – hence the recommendation of a wheelchair or a walking frame by the time he is school age.
However, a drastic surgery on offer in America has the potential to radically alter Sebastian’s future quality of life.
St Louis Hospital in Washington offers the Selective Dorsal Rhizotomy (SDR) surgery, a complex procedure which involves the cutting of some of the nerve fibers between the muscles and the spinal cord.
“It isn’t a cure for cerebral palsy, but it does treat the effects of spasticity,” mother Monique explained.
Monique and Brett said patient feedback on the process was overwhelmingly positive.
“In the long run, it makes his quality of life so much better," Brett said.
They haven’t given up hope of seeing Sebastian take to the field with his two older brothers, Riley and Preston, who play for the Maitland Blacks under sevens.
“We’d like to see him be able to have a run with his brothers,” Monique smiled.
Monique and Brett are aiming to get Sebastian the surgery within the next year, which means he can start school as scheduled.
Following the operation, patients require 12 months of intensive, full-time physiotherapy.
Between the operation and rehabilitation it’s a costly process, with the young family kicking off a fundraising campaign last week.
A trivia night at Maitland City Bowling Club on March 23 will help, with a high tea and golf day also in the process of being organised.
Monique and Brett said they had already been “blown away” by the willingness of the Maitland community to help.
“Everyone has been so supportive, we’ve been getting donations from people we don’t even know,” he said.
“The generosity of people has been unreal,” Monique agreed.
Businesses or organisations that want to help are urged to contact the Stace family. To donate, visit www.gofundme.com/4xljjw8