CRAMMED onto a toilet seat on an iconic blue and yellow plane, Xaviera Farrell watched her baby boy’s chest rise and fall.

Francis was just three weeks old and already he was fighting one of the biggest battles of his life.

While Xaviera thought her heart might be breaking, Baby Francis’s already was.

Born with a ventricular septal deviation – a 10mm hole between the organ’s two biggest chambers which meant oxygenated blood was mixing with non-oxygenated blood — the little boy’s body wasn’t getting the oxygen it needed.

It meant he was dying.

Babies Francis and Ernie were born on May 24, 2020.

But just one day later, Xaviera and dad Ben Cavanagh watched as Francis struggled to breathe.

They knew before birth that the bub had a “dickie heart” but it wasn’t until he was born that they discovered just how sick he was … or how he was so much more at risk simply for being born in the Northern Territory.

They just knew he needed help.

As teams of doctors in Darwin and Melbourne talked, all Xaviera and Ben could do was pray.

Francis, also blessed with Down syndrome, struggled for three weeks in the Darwin Private Hospital.

His family held him in their arms, knowing that these could be the only moments they’d get with their son.

And in those moments, they already knew he was special.

But it was touch and go.

There were times, as the hours ticked by, when Xaviera truly believed her son was going to die.

Finally, a very special cot was rolled into the room. It was a cot that would save Francis’s life.

Xaviera loves the Northern Territory.

It’s where she’s chosen to raise her family, with wide open spaces and adventure on her doorstep.

But in that moment, when the transport incubator was rolled into the hospital room, part of her hated the NT. All she wanted was to leave.

Francis was carefully lifted into the cot and connected up to all of its lifesaving technology.

Finally, after three weeks, the family could see a future for their little boy.

There were so many unknowns when it came to Francis’s life.

Born in the Northern Territory – where you’re twice as likely to die simply because of the location of your birth – distance plays a huge part.

Some 3700km away from the help he so desperately needed, the baby boy not only needed a special plane to take him to one of Australia’s best paediatric hospitals but the permission to go there in the first place.

Covid-19 was plaguing the nation and states and territories had slammed their borders shut.

Xaviera was able to get on the CareFlight plane, albeit jammed onto the toilet seat with Ernie in her arms, but Ben and big brother Ignatius had a big journey ahead of them.

Travelling through nearly every capital city, the pair took 20 hours to fly what normally takes four-and-a-half.

While they were still in transit, the CareFlight plane hit the tarmac at Essendon Airport.

Xaviera had never felt more relief.

She thought of her ancestors, who would have simply had to watch their child die in Darwin. And she prayed they’d gotten to Melbourne in time.

Arriving at the Royal Children’s Hospital, the doctors had planned for Francis’s surgery to be booked in a couple of days.

Looking at the dying baby the decision was made. Surgery couldn’t wait. It had to happen now.

Over the next six hours, Xaviera sat in the waiting room with only her other three-week-old baby for company.

Ben and Ignatius were still somewhere in the air over Australia, not knowing whether Francis would be alive when they finally arrived in Victoria.

In Australia, more than 8000 babies need some form of assisted ventilation at birth each year, while 20 per cent need resuscitation when they are born.

Nationally, one in every 11 babies are born preterm. In the Northern Territory, that rate is much higher.

Quite simply, children who die in the NT often could be saved if they lived in a metropolis like Melbourne or Sydney.

And this is something the Humpty Dumpty Foundation can’t quite fathom.

Working tirelessly to ensure sick kids have a fighting chance by equipping hospitals with the best medical equipment and care available, the charity wants to reduce the Territory’s reliance on interstate hospitals.

And if they can’t do that, they want to make getting to those hospitals possible.

For Xaviera, she can barely think of Francis without thinking of Humpty Dumpty.

It was Humpty, and its supporters, that donated the transport incubator to the Royal Darwin Hospital and CareFlight.

Historically, those cots would have to fly up from Melbourne or Sydney, often taking 32 hours to get a very sick child to the healthcare they so desperately needed.

But, thanks to Humpty and its supporters, the NT now has two transport incubators — both etched with the names of those who donated.

Xaviera can’t remember all the names engraved in the ICU on wheels, but she believes each of those people helped carry Francis to Melbourne on that desperate dash.

When you support Humpty Dumpty, you’re not buying objects, she says, you’re buying time.

The transport incubators – the most expensive item on Humpty’s NT wishlist – cost $300,000 each.

For similar money, you could buy yourself a Lamborghini.

Xaviera has never looked into the eyes of a Lambo, she says, but she’s looked into the eyes of baby Francis.

And there’s nothing she could buy that could replace the life of a child.

As the CareFlight plane made its drastic dash to Melbourne and, with Ernie in her arms, all Xaviera could do was watch that little chest move.

Now, two years later, she still gets emotional thinking about that four-hour flight.

But, thanks to CareFlight and the Humpty Dumpty Foundation, she’s not as upset as she could have been.

It was a stressful time, she says, heartbreaking. She had no choice but to keep moving forward, but looking back the memories are still raw.

Now, thankfully, the Cavanagh family is like any other family.

Ben and Xaviera “don’t sweat the small stuff”.

It’s the gift that comes with having a very sick child, she says, you don’t worry about the little things.

Ignatius loves playing with his little brothers.

Ernie loves swimming, particular with his twin.

And Francis loves dancing.