Shivering in our caravan, I had to smile to myself. People must think we’re mad for camping! I thought. It was July and absolutely freezing.
But my fun-loving boy Noah, seven, was having the time of his life. And that’s all that mattered.
Noah was born 11 weeks premature, in May 2010. The day before, I’d noticed my face was swollen. My GP said my blood pressure was high, but sent me home.
That night, I blacked out and was rushed to hospital with my hubby Mark, 49, by my side. Diagnosed with pre-eclampsia, I was taken for an emergency caesarean.
My first memory afterwards is of being shown a photo of a tiny baby, his face and body covered in tubes. How will I recognise him when I see him? I thought, starting to sob.
But when I spotted Noah in the ICU three days later, I was instantly in love.
Weighing just over one kilogram, my beautiful bub was swamped by wires, but he was doing well. After 51 days, he finally came home.
But when we started weaning, he became violently sick every time he ate. This isn’t normal, I worried. He was given medication for reflux, but nothing worked.
‘He should be safe with rice and pears,’ the doctors said. But even they came back up. At 12 months, he weighed just six kilos.
Finally, Noah was diagnosed with a severe form of Food Protein-Induced Enterocolitis Syndrome (FPIES). It meant he couldn’t eat any foods without a nasty allergic reaction.
So he was fitted with a nasal tube and then a button in his stomach to send a nutritious formula straight to his digestive system. Throughout it all, Noah kept a smile on his face.
When he was 14 months, we found out he had some other health issues. On a visit to the coast, we sat looking at the boats. He was babbling away, but his chatter suddenly changed. One of his eyes closed and his smile was lopsided.
Could he be having a stroke? We rushed him to the hospital, but by the time we arrived, Noah was back to his cheeky self.
Then he started to stumble, as if his legs were stuck together. He stammered, too.
An MRI scan revealed Noah had damage in his brain stem – the part of the brain that controls automatic functions like breathing and heart rate.
We discovered he suffered from stroke-like episodes, caused by a rare mitochrondrial disorder.
There were no other known cases of his exact condition and he was likely to suffer stronger episodes as he grew.
Worst of all, his life expectancy was 10 years.
It was heartbreaking news. Noah is such a force of nature, it’s impossible to imagine life without him.
He loves Star Wars and is obsessed with Lego. He’s also an amazing learner, who loves to read reference books at the library. And he has a wicked sense of humour. Whenever we’re in a quiet place in public, he loves to shout, ‘I really I need a coffee!’
Of course, he’s never drunk a drop! He likes the smell though, and despite never tasting food, he loves to help us cook.
Noah’s formula is stored in a backpack which he carries constantly. It drips into his gut, and fuels all his adventures.
After a damaging stroke-like episode in February, Noah lost the use of his left leg. Refusing to be stopped in his tracks, he learned how to ride his scooter with his right.
Wanting to make the most of every second, Mark and I started ‘Don’t say no Fridays.’ We have to say yes to whatever Noah asks.
Sometimes, I find myself sitting on the floor, playing spaceships. Other days, I’m at Bunnings while Noah examines each nut and bolt.
Our winter camping trip was Noah’s idea too. Last year, we asked Noah what his dreams were. Mark and I wrote them all down and called it ‘Noah’s Living Life List’.
‘I want to hug a seal,’ Noah said firmly. Hug a seal?! I thought. How on earth… but we wrote it down anyway.
‘And I want a picnic…on a volcano!’ he grinned.
‘Anything else?’ I laughed.
‘Build a sandcastle,’ he said. Phew, not so tricky!
Despite not being able to eat, he also wanted a vegie patch in the backyard.
We were determined to tick everything off. We found a dormant volcano in Victoria with a big crater and sat down for lunch.
And we had another stroke of luck with the seal. I told Noah’s teacher, Alesha, about his wish and she instantly offered to help.
‘I’ve got a friend who works for a sea-life centre in Queensland,’ she explained.
So last year, Noah got to snuggle up to a seal.
The Make-A-Wish Foundation also helped with the vegie patch and organised for Little Hipster Kubby to come and give our yard a makeover. Now, whenever we cook, Noah goes outside to harvest his ‘farm.’
I hope one day he can taste the results of his hard work.
I call Noah’s condition our terrible gift. It’s devastating, but also means we live life to the fullest. Noah’s condition is unique, but his personality is truly one in a million.
To help, go to www.gofundme.com/noahbarlow
