For 11 long years, Chantelle Luke endured pain and heartache as she battled to keep her son Dayton alive. Born with a rare condition that left him unable to eat, even the simple act of swallowing water made him choke and he has spent much of his life in hospital.
But the last year has brought the Taranaki mum more joy than she could have ever dreamt of – Dayton has learnt to eat on his own and Chantelle, 32, has welcomed
a gorgeous new baby boy named Falcon.
“I didn’t realise how hard my life had been until it got good and I was happy,” she tells us as she introduces her little bundle of joy. “This baby has healed our family and washed away our hardships.”
Wee Falcon is Chantelle’s first baby with her new partner, Chalakau Piripi, 22. The couple met online and connected over a shared love for family. As well as Dayton, Chantelle has a daughter, Kadeejah, 13.
“She needed help, so I jumped straight in,” says Chalakau, who’s accompanied Chantelle to all of Dayton’s many medical appointments since they met. “Her kids
are part of a package – it’s all sweet.”
Dayton was known to doctors as the “mystery baby” – he arrived into the world with heart defects and an artery wrapped around his oesophagus. With no choke reflex, anything he ate went to his lungs instead of his stomach, with potentially deadly consequences.
Until last year, Dayton was tube-fed through a Mic-Key device in his stomach. His mum put her life on hold, hooking up three-hourly feeds, night and day.
But thanks to a revolutionary eating programme at the Rose Centre for Stroke Recovery and Research in Christchurch, Dayton took his first bites of real food – just two months before his little brother Falcon was born. Dayton attended the two-week live-in course with Chalakau and a heavily pregnant Chantelle.
“He had to start from scratch and learn how to swallow again,” Dayton’s mum explains. “As well as the mechanics of eating, they had to take the fear out of food.”
Chantelle has also taken the big step of handing back her son’s 2kg liquid-feed machine, which had been his constant companion since he was a baby.
“I still wake up and imagine I can hear it beeping,” tells Chantelle. “It went everywhere Dayton went – to school, on the back of his bike, to the park.” Over the years, Chantelle never gave up hope her son would eat on his own – but in the meantime, his day-to-day care was relentless.
A lowered immune system made kindergarten impossible and school was often missed. Dayton suffered constant stomach and chest problems. Last year alone, he was hospitalised nine times.
Through his many sick days, what gave the lad the most joy was Transformers. His vast collection of action figures began when Chantelle decided to buy him one for each painful medical procedure he endured.
Before Falcon was born, doting Chantelle pulled off what many thought impossible. Despite being turned down for charity funding – and with only last-minute medical insurance – the mum-on-a-mission raised $18,000 to take Dayton and Kadeejah to Universal Studios in Los Angeles.
“It was crazy, but it was his dream to meet his hero Optimus Prime,” she says. “After all he’d been through, I didn’t want to let him down.” While it’s been her purpose to put a smile on Dayton’s face, Chantelle loves to hear baby Falcon cry. “He’s a newborn – it means he’s normal,” she says.
“Once you’ve had a gravely ill child fighting for their life in Starship [children’s hospital], everything else is easy.”
Dayton, by comparison, didn’t make a peep when he was a baby. At four days old, he went blue in Chantelle’s arms. Doctors found a hole in his heart and a narrowed aorta. His first open-heart surgery – at just 14 days – saved his life but left him with a damaged vocal chord.
“His little face would screw up but no sound would come out,” recalls Chantelle. Dayton learned to talk as a preschooler but trails off when he’s tired. While the 11-year-old still has a long road ahead of him, he left the eating programme in time to enjoy his first-ever birthday cake. “Mud cake with a Transformers theme, of course,” laughs Chantelle.
Now, for the first time, Dayton is sitting down for dinner with the family and finding pleasure in food. “Meat and mandarins are favourites,” says Chantelle.
Most importantly, he’s learning what it feels like to be a regular boy. “He used to drag his feeding machine to school, but the other day, he got his first-ever lunch
box,” tells his devoted mum.
“I cried.” Chantelle says baby Falcon has arrived at exactly the right time for the family and the future feels bright. “It has taken a village to raise Dayton and for that
I am so grateful. But now I can stop being his nurse and just enjoy being a mum.”