At six months of age, they became significant. But it wasn’t until the end of last year the 10-year-old was formally diagnosed with early infantile SCN1A encephalopathy.

It is a genetic disorder so rare, that Ēadweard is only one of nine in the world with the condition.

His parents Sarah and Stuart Chignell said early on, they had no idea what to expect, with almost every test coming back inconclusive.

“We had no idea what the prognosis was, we had no idea what he was going to be able to accomplish,” Mrs Chignell said.

Ēadweard has up to five seizures a day, can’t walk or talk and requires around-the-clock care.

But he still goes to school, has a sense of humour and loves his holidays to the Very Special Kids hospice in Melbourne.

His family jokes that he gets to go to his five-star resort, while mum, dad and his four siblings go one-star camping, but it’s the look on his face that means the world.

“When you take him into the hospice, he lights up once he realises where he is,” Mr Chignell said.

“It just makes it so much easier to leave him,” Mrs Chignell said. 

“It’s hard enough knowing that all sorts of things can happen with him, but knowing that he’s somewhere he enjoys being as well as the staff are amazing.”

Ēadweard’s journey with Very Special Kids began when he was two years old. For the past eight years, he’s been on average once a year to the hospice in Malvern, giving his family some much-needed respite.

Mrs Chignell said it wasn’t easy the first time around.

“I was quite anxious, Ēadweard was only two, and I had thoughts in my head of how could someone leave their two-year-old in a respite centre? Other parents deal with their kids at home, so why can’t I?,” she said.

But once she walked through the doors, her mind was put at ease that it wasn’t just another hospital.

“I remember at one stage even having tears because I was thinking, ‘This place exists? How special is this place?’,” she said.

Both parents describe the hospice as a “hotel lobby for kids”, with music and art therapy, a sensory room, a bath Ēadweard can use, outings and special visits.

“That’s kind of a relief because one of the issues we had with respite is because his condition is so serious, and so unpredictable, a lot of other places wouldn’t touch him,” Mr Chignell said.

“For not just us, but for a lot of families like us, there’s this gap where, OK, yes, there’s an obvious need, but there aren’t the services there to fulfil that need.

“And so to have the only place in three states that is capable of taking kids like Ēadweard to also be awesome, is such a weight off.”

The Chignells last year took part in a trial transport service to get Ēadweard to the hospice free of charge.

Now the service is being rolled out to eligible regional families over a two-year pilot program called Road to Respite.

The program has been funded through the William Buckland Foundation and is a joint initiative of Very Special Kids and the Royal Flying Doctor Service. 

It is anticipated up to 90 children will access the program, giving them free transport to the Very Special Kids hospice and care along the way in the Road to Respite van donated by Ambulance Victoria.

Once in Malvern, the children receive free, specialised 24-hour nursing care giving their families a much needed break.

Very Special Kids Bendigo family support practitioner Simon Djurdjevic said travel was often a barrier for families accessing the hospice.

“There’s a number of families who have no respite and it’s incredible how they keep going for long periods,” he said.

“This service will be invaluable for families who can’t afford respite or can’t access it locally.”

Very Special Kids’ Bendigo office is based in Long Gully and is connected to almost 30 families in the Loddon Mallee area with a child with a terminal or life-threatening illness.

Mr Djurdjevic said a 2016 survey of 165 regional families supported by Very Special Kids found 68 per cent had never accessed the free hospice before due to travel and distance.

An additional 72 per cent of families said they would increase their access to Very Special Kids Hospice if transport assistance was available.

“For most families, it is the travel that is the barrier,” he said.

“This service is a fairly unique initiative. The trial has been fantastic and it’s really making a difference.”

For the Chignells, the Road to Respite van means the stressful trip of getting Ēadweard from Bendigo to Malvern will be a thing of the past.

“In one trip, we could stop between one and six times,” Mrs Chignell said. 

“If Ēadweard’s having a seizure, if he’s vomited, if his feeding tube needs seeing to, if we need to change him for various reasons, that just drags out the trip.”

“And there’s less risk because if you’re driving, you don’t notice everything or you don’t notice things as quickly as you might and sometimes that can make a difference,” Mr Chignell said.

It’s also one less cost for families who are already finding things tight.

“Very Special Kids is just really, really good at coming alongside families like us and taking yours for a while,” Mr Chignell said.

“And the Road to Respite program is just another example of that. They’re proactive. They’ve identified there's an issue and they’ve gone out and found a way to solve it and not many other organisations do that. And certainly not for families like us.”

For more information about Very Special Kids, contact the Long Gully office on 1800 888 875 or visit www.vsk.org.au.