Leo has a lot to say - but his rare condition won't allow him to speak freely

That's the case for six-year-old Leo Polson, who was born with a rare, lifelong condition known as Childhood Apraxia of Speech (CAS).

Children like Leo with the disorder have trouble moving their lips, tongue and jaw to make the movements needed to produce sounds and words accurately.

The disorder affects 1-2 in 1000 people. North West Tasmanian speech pathologist Evyenia Michellis is on a mission to bring CAS to the state spotlight by partnering with Aleia's Aim, a CAS advocacy group in Western Australia.

Ms Michellis said CAS was poorly understood or even recognised as a disability in most communities.

"There is a misconception that children with CAS will grow out of it or that it only affects their speech, both of which are untrue," Ms Michellis said.

"CAS is lifelong and has many impacts beyond communication.

"Most people in the community don't quite understand just how much those with CAS desperately need intensive and specialised speech therapy to help them."

Leo's mum, Deanne Polson, said she first noticed something wasn't quite right when Leo was around 18 months old.

"He wasn't really talking and we were living in Melbourne at the time so I saw a paediatrician and ENT to have his hearing tested and all the rest of that," Ms Polson said.

"We moved back to Tassie after some initial investigations in Melbourne but it wasn't until my daughter came along that we got some help with Leo, and he was two and a half by then and wasn't speaking much at all."

She said Leo wasn't diagnosed with CAS until he was three and a half years old by Ms Michellis.

While Leo's condition has improved thanks to intensive therapy, Ms Polson said there were many stressors as a parent that came with the diagnosis.

"You have a lot of worry and fear that he won't talk properly or he won't be treated nicely by other children - you catastrophise," Ms Polson said.

"It also puts a lot of stress on finding the right help; it's really difficult to get the right advice and it might be a very long wait before you can see a speech pathologist.

"You need money to do that as well so NDIS funding is fairly life changing in that regard."

As Ms Polson accurately summarised, Ms Michellis was a "powerhouse" when it came to advocating the disorder.

Besides writing two children's books about CAS soon to be released, Ms Michellis and Aleia's Aim secured 137 landmarks across the country to be lit up in blue for the first time for CAS, with 10 additional landmarks across the UK and Abu Dhabi on May 14 - Apraxia Awareness Day.

That includes Launceston's own Town Hall.

Ms Michellis designed and released apraxia apparel including beanies, bucket hats and stubby holders all in the hope it sparks more conversations around the disorder.

"Those with CAS are warriors, fighting every day just to speak," Ms Michellis said.

"People are naturally afraid of what they don't understand.

"However, with better awareness and knowledge I hope to see more compassion and understanding in a community that feels empowered and equipped with the tools to support individuals with CAS."