Little Jasper Lyon finally out of hospital but not home yet

Jasper Lyon has Costello syndrome, a rare genetic disorder that affects every cell in his body.

Worldwide there are around 300 recorded cases of Costello syndrome.

Only two children in the world have the same scale mutation.

If that isn't enough to cope with, Jasper also has a life-threatening form of epilepsy called SCN1A.

At one point he was suffering 50 seizures per day.

A GoFundMe fundraising campaign has raised nearly $40,000 for the little boy.

Jasper almost immediately needed expert care when he was born five months ago in Port Macquarie.

"When Jasper was born it was a really graphic site and they were completely unprepared because all signs (of which there were many) were missed on the multiple x-rays taken during the pregnancy," said Jasper's uncle Steve Lyon.

"Obvious there was something drastically wrong, the hospital didn't really know what to do."

When Jasper finally came home he stopped breathing and mum Sas had to revive him.

He was then airlifted to John Hunter Hospital in Newcastle where remained with his mum "pretty much living in the PICU ward" for the first four months of his life.

Late August little Jasper finally was discharged from hospital but the family made the difficult decision to permanently relocate to Newcastle so Jasper can be close to expert care.

"It was quite a stressful process trying to find a home that had all of the specific attributes needed to suit Jasper's trachestomy and epilepsy," Jasper's mum Sas Lyon said.

"We are so used to just being able to fling ourselves into a new place - he has really helped us to be more considered with our approach to life that's for sure."

Mrs Lyon said Jasper is getting better each day.

"He is in the best shape he has been in since he was born ( I don't want to type that too loudly in case he takes it as a personal challenge and throws a spanner in the works)," she said.

"He hasn't had a seizure since the awful SCN1A was controlled with new medication around five weeks ago."

But it is still a long road.

"As he has integrated into life outside the hospital we have seen a marked increase in his behavioural breath holds - these are when he holds his breath until he turns blue when he gets cranky," she said.

"Sometimes he is too tired to breathe again by himself and we have to apply an oxygen mask and give him rescue breaths through his trachy.

"Who would have thought resuscitating your child would be a regular occurrence?"

Mrs Lyon said the family was grateful to the staff at John Hunter Hospital.

"We know we are living in one of the luckiest countries for a medically fragile child to be born," she said.

Jasper's sister Darling has had to adjust to her new home and new school.

Darling is in kindergarten.

"The poor little thing, she has been such a trooper," said Sas Lyon.

The family would love to one day come back to Port Macquarie.

'Port Macquarie is where our family is and the amount of support we have been given during this terrible time has shown us again why we love being home," Sas Lyon said.

"Nothing beats having family around you when times are tough.

"We are so grateful for how wonderful everyone has been."