Tayler, aged 11 from Auckland
Tayler is only 11-years-old and already he knows what he wants to be when he grows up – a racing car driver.
In just over a year participating in Go-Kart motor sport, he’s competing in nationals, wearing full protective gear and Tayler seems to have no fear.
“I like it when you are going to pass and you’re up beside someone – you just wing it,” he grins. Tayler’s got his own trailer and is being sponsored by Bill Russ Tyres, and also his grandparents who are extremely supportive of Tayler’s dream to race cars. He also loves rugby, running, trampolining and surfing – sports that are good for keeping his lungs healthy.
“One of the reasons I’m so open about Tayler having cystic fibrosis (CF) is that if you try and hide it, it becomes more of an interest to people. We’ve always been very open at school and with friends and family that he has what he has.
At first it was a big deal at school with kids asking ‘why are you taking pills?’ But after finding out they don’t make a fuss or make him feel like he’s different. Tayler sometimes asks, ‘why did I have to be born with cystic fibrosis?’ That’s a really hard one to answer because there is no answer.
I will always remember the day Tayler was diagnosed. I was sitting in my midwives office when she received a call from the newborn Blood Screening service. Tayler was five weeks old and had issues with weight gain and also diarrhoea after every time I fed him.
As soon as my midwife started talking I knew the call was about me and that it was bad news. I heard the midwife say ‘actually I’ve got the mother here with me now’. It was the results from Tayler’s heel prick test – he had come up as an alert for CF. She gave me the cystic fibrosis pamphlet and all I remember seeing were the words ‘life shortening’. After that I couldn’t think of anything else.
It took a long time to feel better – a good couple of years of grief.
I’ve recently read there are three stages of cystic fibrosis. 1. You want to wrap your child in cotton wool. 2. You become a bit more relaxed as they get older. 3. You end up doing a bit of both – and I think that’s where we are now.
We are fortunate that Tayler has got to 11 and not had a hospital admission. We have Tayler’s treatment routine sorted. Its 20 minutes of hypertonic saline with a nebuliser and also PEP (physio) in the morning and then 30 minutes of PEP, hypertonic saline and Pulmozyme in the evenings. We very rarely miss a treatment.
It’s hard for Tayler not being able to enjoy some of things other boys do – pets for example. Rabbits and guinea pigs because of the hay, and bird poop contains a dangerous bacteria.
There’s still the uncertainly about the future – you just don’t know what’s around the corner Personally I don’t think there’s anything positive about my son having CF. Maybe, we’ve met some lovely people along the way and maybe it makes you appreciate life more and to live for the moment, but I wouldn’t wish CF on anybody.
My hopes for Tayler are the same as they are for all my other children, my older daughter Ashleigh (23) and youngest son Jordan (9) – neither of whom have CF. I want them all to live long, happy and healthy lives, and to have a family of their own one day.
