Updated 17 April 2018

‘I want to run around without my oxygen tank’

Her bag is always packed and ready for a trip to the hospital.

Her bag is always packed and ready for a trip to the hospital.

But all she wants to do is be able to run around and visit places she’s never seen before without having to think about her oxygen machine, which has only two hours of battery life before it needs to be refilled.

This is the dream of cystic fibrosis sufferer Vanessa Neveling (25) of Port Elizabeth and now she’s one step closer to achieving it.

Vanessa is in contact with a doctor at Groote Schuur Hospital in Cape Town and soon she’ll find out if she can get onto the waiting list for a life-saving double lung transplant. The appointment was initially scheduled for 16 April, but Vanessa got sick so it was postponed to 14 May.

Her body is currently too weak for the flight from Port Elizabeth to Cape Town.

Vanessa was three weeks old when her parents realised all was not well with their little girl and shortly afterwards she was diagnosed with cystic fibrosis. 

The life-threatening genetic condition causes a thickening of the mucus produced by the body, which affects the lungs and the body’s digestive system and lungs.

“When I was younger it was okay,” Vanessa says. 

“But as I got older and realised what cystic fibrosis meant, it became harder and harder for me because I knew there were things I’d never be able to do.

I can only walk about 20 steps before I’m out of breath and if I laugh or talk just a little I’ll start hyperventilating.

“I need to be on oxygen for most of the day.”

Brave Vanessa’s inner strength came to the attention of singer Desmond Wells, who contacted YOU magazine about her.

“She’s really an inspiration to so many people,” he says.

“It’s difficult for her because when she gets sick she only has about 20% of her lung capacity.”

Desmond goes to visit Vanessa whenever he performs in PE.

When she was younger, Vanessa was in hospital almost every six weeks but these days she’s barely at home for a week before she’s readmitted.

“I spend a week or two at most with my family, then I spend about two weeks or sometimes a month in hospital. It’s not always nice because I’d really love to spend more time with my family but I’m so used to it my bag is always packed and ready.”

At the moment she’s been in hospital for 25 days and needs to stay for at least another two weeks. Vanessa feels disappointed that the doctor’s appointment needed to be postponed, but remains hopeful.

“I believe things will get better.”

Vanessa’s doctors encouraged her to get a lung transplant in 2014 but she could never afford medical aid or get onto a waiting list.

In December last year she read about a double lung transplant that had been performed at Groote Schuur.

She emailed the doctor and he invited her for a consultation so he could evaluate whether she’s eligible for a spot on the waiting list for the procedure, which will be financed by the hospital.

In the meantime Vanessa remains optimistic and holds tightly to a Bible verse, Matthew 21:22, which Desmond shared with her.

“If you believe, you will receive whatever you ask for in prayer.”