When Kayla White was born with hydrops fetalis she became the first child in Aotearoa to survive the rare lung condition for some ten years.
Now aged ten, Kayla has already clocked up 16 surgeries.
The chronic lung disease has at times filled her whole chest cavity with fluid, and delayed her growth.
The Nelson child also has emphysema, has narrow airways and gets air-trapping in her lungs. She struggles to keep weight on, has been tube fed over the years and is treated with steroids and takes two different inhalers.
Due to her health condition, Kayla, her brother Lukas, 8, and mum, Angela are among those still in isolation.
“I am very nervous about us getting back out there again,” says Angela.
“We just have to be so very weary of respiratory bugs and mindful of people who are sick.”
The Nelson family have been in noho rāhui / lockdown since March 18, after Angela received a phone call from the children’s principal notifying them of a respiratory bug at school.
A friend has helped deliver groceries to the family, who have been staying occupied by walking and watching movies together.
“I was planning on sending them back this week but the 100 number limit makes me nervous. If people are congregating in groups of 100, we don’t know where they have come from or who they have been in contact with and that makes me nervous.”
Angela says Kayla knows what is going on, and although she wants nothing more than to get back to school, she does understand why she is home a little longer.
While isolation has been really tough on the family, with both children missing their friends, staying at home has had a great impact on Kayla’s health, who normally catches most winter bugs.
“She hasn’t had another chest infections, which is a first. And she is looking healthier,” says Angela.
When it does get too much for the children, Angela, a solo parent, tries to take their worries away.
“I’ve just said don’t worry about it. Give me all your worries. Bundle them up and throw them at me.”
As the rest of the country goes back to work, school and out into the world once more, Angela wants people to remember those still stuck at home and consider the needs of our immunocompromised and vulnerable.
“Treasure this time and enjoy it but think about these other people and kids still at home – and do the right thing. Be mindful. Keep the distancing going. Don’t go to work if you are sick. Any respiratory bug could be fatal for our kids, so when you’re sick, stay home.”
“Until people have walked in my shoes for the past ten weeks and ten years, you will never know just how terrifying these bugs can be.”
Angela says they have been really well supported by the school and her kid’s teachers.
“The school has been amazing. Kayla’s teacher has been dropping things in our letterbox.”
It is a kind gesture that has meant the world to the family.
“My every day normality has gone too,” says Angela.
“My message to everyone is to think about the kids still at home and keep in touch.”
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