 |
Tracks tags along with Nathan Hedge as he takes kids with Cystic Fibrosis surfing at North Narrabeen. |
Nathan ‘Hog’ Hedge re-engauges with the North Narrabeen lip (L). Annie and Sally Finn (R). All Pics: natesmithphoto.com
Nathan ‘Hog’ Hedge was precise when he asked if I could meet him at North Narrabeen car park at 7:45AM to meet the crew from Cystic Fibrosis Australia. Nathan’s been in talks with this important organisation in a bid to find out how he could best help raise awareness of the disease and some funds for research too.
It was cold and windy when we met (right on time), but luckily the sun was creeping slowly above a band of clouds over the Pacific promising respite. The waves were building and Northy was serving up some inviting lefts. Hedgey salivated at the sight of these lefts when he arrived, but we both aired our concerns that the kids may not find them so welcoming.
Getting to meet the crew from CFA was one thing – they do a great job. But today it was all about the kids who’d been invited to come have a surf lesson with the champion surfer at his home break. I imagined them to be brave souls with a lust for life – I wasn’t disappointed.
Like many of you, I only had a vague idea of what living with the disease Cystic Fibrosis entailed. Until a disease such as this affects you or someone in your family, you really can’t pretend to know the hardships involved.
The Finn family from Newport were the first to the beach and it wasn’t long before both James and his little sister Sally were in their wetsuits and ready to hit the water, thanks to a little help from their Mum and Dad, Annie and Pete.
Nathan pushes Sally into a foamy one (L). Sally, Nathan and James make their way to the water (R).
12-year-old James has had plenty of experience with nippers, and even had his own paddleboard, but little Sally at 10, was not nearly as experienced. As Nathan lead the thin-as-a-whip Sally and her strong looking brother James through some beach instruction before paddling out, I chatted with Annie and Pete about having two kids with Cystic Fibrosis.
First I asked them to straighten me out with some facts. What I learnt was that a staggering one in 25 people carry the CF gene, but have no symptoms. When two people who carry the CF gene (like them) come together, there’s a one in four chance their offspring will have CF, a two in four chance that offspring will only be a carrier, and a one in four chance of nothing. “We did it twice!” Annie declared with a weighty reflection of ‘what can you do?’ astonishment. Having had no idea they were even carriers before falling pregnant with Sam, they only received the bad news after their first neonatal heel prick test. With Sally I asked? “With Sall we were actually given a false negative, she came up only as a carrier…” We collectively paused momentarily to digest the fictitious hope that incorrect information meant for the family – only to be tapped on the shoulders by a ray of positivity as Nathan launched Sally onto her first wave. In a flash little Sall was up and riding and we were hooting in unison. There’s no time for ‘what ifs’ when your children have CF.
After the exhilaration of Sally’s ride Annie expanded on my lack of CF knowledge by admitting to being in a similar situation early on. “When we were told James has CF, I thought he was going to be in a wheel chair dribbling – we had no idea of what it meant.” The friendly mother of two told me. “Our first paediatrician told us he [Sam] wouldn’t live till he was seven. He was four weeks old. We questioned why he’d even say that to us? But quickly got a second opinion from the right doctors and didn’t hit the pillow with that in our heads.”
They went on to explain that the life expectancy thing is a tough one, and something the kids are yet to ask about. Pete sombrely adding, “It is confrontational, and we’ve been advised that it’s now in the late twenties.”
We discussed those early years and their sudden need to educate themselves about this mysterious disease that Sam was (first) born with. A disease that leaves the patient with day-to-day symptoms such as massive blockages of the bowel that end in constant tummy pain – a symptom referred to by some doctors as constipation, though it comes with terrible diarrhoea as well. “You eat and then you poop”, Annie expanded, no doubt remembering all the times she and Pete had gone through all this with Sam and Sally. “With that you thenget malnutrition”, she added, “which is why Sally is so skinny. Then you have the other side of it, which is lung infections – constant lung infections. It’s like you have that annoying cough, with mucus all the time. They just can’t get rid of it. That’s why this [surfing in and breathing fresh salt water and air] is so good. One-treatment for CF sufferers is a saline solution (salty water) administered through a nebulizer.
What better way to celebrate their morning than with a hi-five.
Knowing how good a splash in the ocean is for these kids made seeing Nathan get Sally into another sweet little white-water ride just thirty meters inside from Narrabeen’s heaving car park right closeouts all the more special. “I can never get her to do that.” Sally’s Dad Pete says looking on. Like many fathers Pete tries to get his daughter in the water but she often recoils and is timid around waves. Annie chimes in with the notion that perhaps having a good-looking instructor like Nathan leading her around may be the cause of her sudden bravado. Whatever it was, it worked. Sally rode a score of waves and along with James had a blast. James, who had taken it upon himself to try to break through the close outs, impressed by taking on some solid dumpers and getting lit up like a Christmas tree on more than one occasion.
As the kids made their way in I asked about financial cost. “In the beginning it didn’t feel like much, but it’s creeping up.” Annie said. “Especially when you buy travel nebulizers times two and the attachments at over 600 dollars each. Luckily we have a health care card (which all kids under 16 with CF are entitled to in Australia) and drugs, which could cost $2000, are very cheap. So thank God we live in Australia.
Costs certainly would add up when you include getting to the hospital, car parking, even their special food is expensive. The kids are on high salt, high fat diets because their pancreas doesn’t work properly (or as good as it should). Fat slips through their body. Even bad fats are good. This last fact reiterated by Pete, “The only encouraging thing we were told when we saw our doctor was the news that the perfect meal for your children for the rest of their lives will be McDonalds.” There’s got to be a sponsorship right there I added.
Nathan ‘Hog’ Hedge chats with the CF crew onshore at Narrabeen after a session.
Before we knew it the kids were all in shivering and dripping wet. It was smiles all round as Mum and Dad wrapped the two up in towels. I asked little Sally what she thought about while she was up surfing. “Nothing.” She replied. “Just happy thoughts, kinda.” Perfect. Job done I thought.
After some handshakes and hugs they said their goodbyes. Nathan added some words of encouragement for the day’s session. “This guy, he’s not scared.” He said motioning to James. “Both you guys did really well! Thanks so much for coming down.” The kids reciprocated with their own appreciation for Nathan’s time and toddled off to get dry.
Afterwards Nathan and I agreed that there can be no better relationship for surfing than helping the Cystic Fibrosis Foundation raise awareness of this disease. If at the very least a partnership helps more sufferers get into the healing salty water to benefit from surfing lessons such as this – then the world would be a better place. “There could be even more exciting news than that too, Col!” He said with a glint in his eye. “What’s that?” I asked. “Can’t say yet – stay tuned buddy.”
With that he was gone, the former world tour surfer had 20 minutes before another couple of kids were due to enjoy some private lessons, so he was out to grab a couple for himself. As he made his way to the water I pondered an early observation of Annie’s. “Why do surfers always run to the water?” She’d asked out loud as a surfer ran by us on the beach. “You never see surfers walking to the waters edge.” I figured when she gets in the cars and sees the smiles on Sally and James’ faces she’ll have her answer.
Stay tuned to Tracksmag.com
