Jasper Lyon started Kindergarten at Port Macquarie Public School in February cheered on by his family and friends.

It was a day his family thought would never come. Jasper was not expected to leave hospital when he was born in 2019 with a rare genetic disorder, Costello Syndrome, that affects every cell in his body.

His family was told 18 months ago by a private health consultant that Jasper would never go to school.

Enter Alanna Holding, a learning and wellbeing officer with the Department of Education, working in collaboration with Department of Health nurse coordinator Laura Harrison.

“If you want Jasper to go to school then we will work together to make it happen,” Mrs Holding told Jasper’s mum, Sas Lyon.

"Every child has a right to an education and to attend their local school.”

Mrs Lyon said she and husband, Matt, felt fortunate to live in Australia where Jasper, with his highly complex medical needs, could access education like every other child.

“It feels like we have been able to raise the world up to meet Jasper,” Mrs Lyon said.

“We feel so lucky to live in Australia where children like Jasper, who are often put in the too-hard basket, can access education.”

She told the ABC, which profiled Jasper’s journey to school: "When we went directly to the Department of Education, the entire world opened for us. There was a change in what was accessible to Jasper.”

Mrs Holding said Port Macquarie Public School, a leader in inclusive education, had been “incredible”.

“When I phoned [principal] Brett Thurgate last year there was no hesitation whatsoever about Jasper starting school. He just said, ‘No problem, Alanna’,” she said.

“I think it is so important to share this story. Look what we can do in public education.”

Port Macquarie Public School has 50 of its 450 students in seven support classes.

Jasper, aged six, is in a class of seven students with his own nurse and a student learning support officer, funded by the Department of Education. He has access to technology enabling him to learn to communicate using his eyes, and specialised equipment to support posture and position.

Mr Thurgate said the school had a strong connection with Jasper’s family and “we’ll do everything we can for him as he starts his education journey”.

“School is now Jasper’s time, and we fully support his family’s wishes for him to be exposed to new experiences and integrated with all the other children.”

There are only 1000 cases of Costello Syndrome worldwide. Jasper also has a very rare form of epilepsy called SCN1A (Dravet syndrome) – and is the only person recorded to have both conditions.

Newcastle geneticist Matthew Edwards helped diagnose Jasper with Costello and Dravet syndromes in 2019.

He told the ABC he had never seen one child with both conditions: "Individually those conditions are so rare, you wouldn't expect a specialist to see either of them in a lifetime.

"There's hope in the future years medications will interact with proteins and modify his seizures and growth and the effect Costello syndrome has on him."

Jasper and his mum spent five months in Newcastle’s John Hunter Hospital after he was born. The family then lived in Newcastle for four years but had to stay within 10 minutes of the hospital.

The family was last year able to move back to their hometown of Port Macquarie when Jasper’s medical condition improved and they could be back among their extended families.

Jasper’s parents, sister Elvie, 2, and grandparents were with him as he entered the school gates on his first day in February.

“There wasn’t a dry eye in our team when Jasper rolled into school for his first day with his proud family cheering him on,” Mrs Holding said.