Determined little boy Ash Henry is at the heart of a family's plea to fix a major highway. The road's closure has made an already difficult journey to life-saving medical care even harder.
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Christie Henry's one-year-old son Ash has already overcome more than most people face in a lifetime, but a major highway closure across the NSW Blue Mountains has turned routine medical appointments into a stressful and exhausting ordeal.
Ash was born at just 27 weeks, weighing 867 grams. He spent 18 weeks in hospital battling a series of life-threatening complications, including a hole in his heart, brain bleeds, kidney failure, multiple infections and chronic lung disease.
When Ash was discharged from hospital he came home with continuous oxygen as a consequence of his chronic lung disease and a feeding tube due to Cerebral Palsy caused by his brain bleed.
"He is the most incredible little kiddo you've ever met, he's just determined, he's happy, he's bright, he's so brave," she said.
Living in Dubbo, in NSW's Central West, with his parents Christie and Lee, Ash still requires regular specialist appointments in Sydney.
Charity flights were ruled out because many small aircraft are not pressurised enough for a child on oxygen. Commercial flights were also not possible due to Ash's respiratory requirements.
That leaves just one option.
"The only option we have is to drive," Ms Henry said.
The 'Fix the Great Western Highway' e-petition began circulating on Monday, demanding the urgent reopening of Victoria Pass - which connects the highway to the Central West - and a commitment to a modern, fit-for-purpose highway that supports the Central West's growing economy.
Complexity of driving over the mountains
Each appointment means both parents taking time off work and undertaking a long drive to Sydney. With Ash needing frequent stops and extra oxygen as the car climbs through the Blue Mountains, the trip can take six to eight hours each way.
"My husband drives and I sit in the back with Ash because he becomes very short of breath sitting in the car seat for that long," she said.
"Once we hit about Lithgow I turn up his oxygen cylinder because as we go over the mountains it gets harder for him to breathe. It's not noticeable for us, but it is for him."
The family usually stays overnight before Ash's appointment, then makes the return journey home immediately afterwards.
"It's two days off work for both of us every time, and it's not only financially devastating, it's so stressful when you know he's going to struggle and there's nothing you can do to stop it," she said.
Even more difficult
The closure of a key section of the Great Western Highway has made that trip even more difficult, forcing drivers onto longer and steeper routes such as Bells Line of Road.
"I am so angry I could scream," she said.
"We did not ask to have a medically complex son but he is ours and we will do what's best for him always, but something as asinine as a road closure because the government hasn't invested in roads out west for decades is adding to our heartache and trouble."
For families like the Henrys, the extra travel time is more than an inconvenience.
"It's not fair on him, if it was just my husband and I going back and forth, yes it would be annoying. But it's Ash, and he deserves a highway that works," Ms Henry said.
"I don't think that's too much to ask."
The need for a tunnel
She said it was particularly frustrating to see major new motorway projects being opened in Sydney while regional infrastructure struggles to keep up.
"The day they announced the damage was significant and the highway would be closed, they also opened a brand-new motorway in Sydney," she said.
"Somehow Sydney doesn't have enough motorways, yet we've got none."
Ms Henry said long-discussed plans for a tunnel through the Blue Mountains, which would provide a safer and faster connection for Central West communities, had never eventuated.
"We've been calling for a tunnel through the mountains for years," she said.
"It's the age-old adage that once you get over the Blue Mountains, nothing else exists."
She said many families from the Central West face similar journeys to reach major children's hospitals.
"You go to the hospital and you see families from Orange, Wellington, Narromine - all over the Central West," she said.
"We are definitely not the only family in this boat."
'He deserves better'
Ms Henry said while some appointments can be done via telehealth, many require doctors to physically examine Ash.
"They actually need to see him, touch him, look at his numbers and run tests," she said.
The situation has left Ms Henry frustrated that regional families still struggle to access reliable transport routes to essential healthcare.
"We were promised when we left hospital that Ash would have the same access to services as any city child," she said.
"But at the moment I'm waiting to see that, because something as simple as a road has impacted his ability to access the care he needs."
For Ms Henry, the issue goes beyond infrastructure. It is about giving children like Ash the same opportunities and medical access as those living in metropolitan areas.
"As I keep saying, if it was for me and my husband I'd be fine," she said.
"But he deserves better."
