Cerebral Palsy Education Centre helping young Ace fight back

A LITTLE Rowville boy is fighting back from a rare degenerative condition with help from group therapy sessions.

Bianca Bartlett enjoys the sunshine with her son Ace, 4, who is getting help for symptoms of Aicardi-Goutieres Syndrome at the Cerebral Palsy Education Centre. Picture: Tim Carrafa

A LITTLE Rowville boy who has a rare condition that affects only 120 people in the world doesn’t let it slow him down.

Ace Bartlett, 4, has Aicardi-Goutieres syndrome, a degenerative neurological condition which calcifies parts of his brain, mainly the parts controlling his movement.

Ace’s mum Bianca Bartlett said she had a very normal pregnancy and birth and it wasn’t until Ace was three months old that she and husband Ian noticed Ace wasn’t reaching developmental milestones.

After a short stay in hospital and MRI scans, doctors discovered he had the incredibly rare genetic condition, which presents like cerebral palsy.

Ace has attended the Cerebral Palsy Education Centre in Glen Waverley since he was one and Mrs Bartlett said their support had been phenomenal.

He receives speech, occupational and physio therapy in group sessions at the centre.

Ace, who also attends Park Ridge Preschool in Rowville, can’t walk or talk, and uses a walker to get around.

Before he started at CPEC he had no upper body function at all but now can hold onto things, pick things up, and feed himself.

“His condition is degenerative which means he should be going backwards; he should be losing skills, but he’s actually gaining skills,” Mrs Bartlett said.

“He’s learning something new almost monthly; this month he can step to the side which we’ve been working on for years.

“For him these are amazing gains and he works so hard to achieve them.”

Mrs Bartlett said Ace was just like a normal four-year-old boy, despite the challenges he had faced.

“At the end of the day Ace is Ace; he is not his condition,” Mrs Bartlett said.

“We are just allowing him to develop and to make progress as a little boy not as his condition.

“He is creating his own path.

“He is very rambunctious, he loves doing anything physical, is very easy going, always happy, and always smiling.”

The Bartlett family has raised more than $40,000 to support CPEC through fundraising efforts over the years.

Details: cpec.org.au