She might look like a healthy little girl but a common cold could kill her.
Kayla, who has a severe respiratory illness, weighs only 18kg as her lungs burn energy just struggling to breathe. Her mum Angela White has to feed the 7-year-old a special high-calorie diet that includes three tubs of margarine a week to keep her weight up. Her 5-year-old brother is 4kg heavier than her.
"I hate seeing her naked or even in her togs," White said.
"All you can see are collarbones and shoulder bones and that's because of her lungs are working so hard.
"It's sucks. I'm a single mum. You just deal with it day to day. It's become our life now."
Kayla White suffers from severe respiratory disease after being born with hydrops fetalis. Even the common cold could kill her. Photo / Supplied
Kayla was born in a critical condition with hydrops fetalis, a condition that means fluid in her chest cavity restricted the growth of her lungs. Because of this she has chronic lung disease, asthma, emphysema, fibrosis and her lungs only have 70 per cent function.
More than 700,000 Kiwis have a respiratory condition, it's the third leading cause of death and costs the country at $6 billion each year, the Asthma and Respiratory Foundation reported. In New Zealand over 521,000 people take medication for asthma, making it the most common respiratory condition in the country.
Kayla after getting her feeding tube removed last year. Photo / Supplied
White is speaking out about the difficulties they face for Breath Better September which encourages Kiwis to show support for better breathing and healthy lungs. She also hopes to raise awareness of the Foundation which is currently not Government-funded.
While children with cancer get a lot of financial support White wished children with other severe illnesses got the same treatment. Kayla's illness meant White can't work and the family live on around $200 a week after rent and bills.
"I get paid on Thursday and there's nothing left by Sunday.
"My son is saying 'mum have you got money this weekend can we go for a swim'? I'm like mate I can't afford it. The look on his face is just sad. He's doing jobs around the house to earn money but I can't afford to pay him. He's so aware of our situation at just 5.
"I think it's about time that the asthma and respiratory foundation got some recognition. They need that funding to help kids like Kayla who don't get that help."
Set up a fundraising page on Everyday Hero and choose Asthma and Respiratory Foundation NZ as your charity. Then select a challenge that keeps your lungs healthy and active during September. The challenges could be:
• Doing yoga or practicing meditation every day for the month • Going for a walk every day • Going swimming each week • Training and competing in a running race • Taking your medications as prescribed and creating a good routine (if you are not doing so already) • If you are a smoker, you could set the challenge to quit • Eating 5+ fruit and vegetables a day
The options are endless! Anything that works towards healthier lungs is a great challenge to set.
