Kayla White’s lungs might be “stuffed”, in the words of her mother, but what she does with those lungs is quite remarkable.
The 13-year-old is in a cheerleading team, a marching team, Girl Guides, and was in her intermediate’s Kapa Haka team and choir.
She runs in the cross country every year, takes part in competitive swimming and was in her school’s maths team.
On her 13th birthday on February 23 - a milestone doctors thought she was never going to reach - she was awarded the Cody Forbes Award for Courage at the national Respiratory Achievers’ Awards, held by the Asthma and Respiratory Foundation in Wellington.
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The Nayland College student is humble about her achievements: “It’s just normal to me,” she said.
“I want to do those things, so I keep going.”
Kayla has been a fighter since day one, arriving into the world via emergency c-section at 33 weeks, “because she basically died,” her mother Angela said.
She was born with hydrops fetalis, a serious condition with a low survival rate that caused permanent damage to her lungs. In her first year, she spent 135 days in hospital.
Once out of neonatal ICU, she had a nasal gastric feeding tube and oxygen delivered through cylinders at home.
She’s undergone 16 operations and procedures, up in Auckland’s Starship Hospital, because she’s too high risk to go under anaesthetic at any other hospital.
Now, Kayla has a range of respiratory conditions –chronic lung disease, asthma, emphysema, pulmonary fibrosis – which make breathing difficult.
She was told by doctors at a young age that she wouldn’t be able to do anything physical – a prediction she has continually defied.
“When Kayla is told she can't do something, she will go out of her way to prove them wrong,” Angela said.
“She’ll always give it a go, even if she is slower than everyone else, or needs to run the cross country with an inhaler in her hand. She gets breathless, but her pure determination gets her through. She doesn't take no for an answer. She is the most determined kid I've actually ever met.”
During the pandemic, Kayla had to miss a lot of school. She’s had Covid-19 twice – the first time, she breezed through it, the second time, she was congested, wheezy and out of breath.
It’s a struggle to keep weight on her – doctors suspect that she may have Avoidance and Restricted Food Intake Disorder (ARFID).
Angela said Kayla sometimes “full on panics” if she was offered a new food because she was scared of it - a consequence of being tube fed for so long.
Despite her health issues, the Kayla shows no sign of slowing down. This year, she started at Nayland College, where she has signed up to an outdoor education course involving activities like kayaking and mountain climbing.
Angela said she wouldn’t “wrap her up in cotton wool”, but at the same time she has to be mindful – a cold could kill her.
“I'm telling her, ‘Kayla, you got to slow down and be careful’. But she's like, ‘Nah, stuff it, I'm doing it anyway’.
“She knows all about her health, and she knows about the risks, and she knows the predictions and everything. But she's like, ‘You know what, Mum? I'm just going to live’. She’s got a cool attitude to life, basically.”