Max 2018 006

Max, aged six from Southland

"Like many parents, the first time I found out that Max could have cystic fibrosis was when my midwife called me about the results of his newborn heel prick test.

 

Max’s test had come back positive for cystic fibrosis. My son was healthy, he was still growing and we thought everything was fine but it didn’t stop us feeling shocked and fearful. I looked at my cousin who had just been diagnosed with cystic fibrosis at the age of 8 and how her lungs were damaged, and instantly thought of the worst case scenario.

I wasn’t aware of the genetics behind cystic fibrosis at that time and how the cystic fibrosis gene can be in the families for generations without knowing.

My best coping strategy was listening to everything the doctor said. I made sure I did exactly what he said – all the time. We do physiotherapy all the time and if anything happens I am on the phone. I can call the outreach team at any time and they are very encouraging and supportive.

Max is six years old now and although he’s been in hospital a few times, he’s been fine for the last two and a half years – in fact more than fine. He’s a healthy weight and doing so well at sport. He’s a fast little runner and received the most valuable player of the year award for his first year at Rippa Rugby. Kids are meant to do Rippa for two years but because he did so well, and because of his size, they have moved him up a level.

When we decided to have a second child we took the option of having IVF and pre-gestational diagnosis screening for cystic fibrosis. Out of four embryos, one had cystic fibrosis and the other three had the cystic fibrosis gene. Isabelle was born in 2015. She’s a carrier for CF but does not have the condition, and she’s just as outgoing as her brother.

We’ve never held Max back from anything. We offer him any opportunity we can. Living where we are in Southland he can do anything – he can go biking, boating, motorbiking, hunting and fishing.

I still can’t help worrying about the future might hold for Max. My biggest concern are the teenage years – that’s when kids with CF can stop doing their physio and their daily treatment.

We want Max to be able to take advantage of any opportunity he wants. We think he’ll go down the sporting route but he also did a great job in his school production “Little Stars” – performing right in the front row.

We think it’s important to live your life as normally as possible and don’t let CF hold you back. As soon as you start putting them in a bubble that’s when things can change.”