Carer Boy

Reporter: Tim Noonan

Six months ago we brought you the story of 10 year-old Jak Billing who's caring for his dying father Darryn. It's an incredible father-son partnership but, unfortunately, it's not getting any easier. In national carer's week, our reporter, Tim Noonan, returned to recognise a very special young boy - and a very proud dad.

"When I'm not here, Dad finds it tough. He can't do stuff what he wants to do." Jak said. "Sometimes I feel like I'm a Dad to my Dad."It's a love story of the worst and the best kind. Father and son counting down their last days together. Every waking moment is precious beyond belief.

42-year-old, Darryn Billing, is in the fight of his life with motor neurone disease. "We are taking everyday as it comes."His son, Jak, is there to care for him every day and every night. "I'll be there for him. He's trying hard to do stuff and he can't do it so I help out.""I love him, yeah, dearly." Darren says.

A single dad, Darren split with his ex-wife almost eight years ago. Now, it's just the two of them. "There is no wife or mother to share the burden."This is Darryn when we first met him six months ago. "Is there anything you think we need? You tell me if you see anything."Back then he was still able to walk. Tragically, things have moved quickly,

this is Darryn today. "I'm not there physically for him any more."

"He can't play basketball with me any more, he can't kick the football with me." Said Jak.The disease has now spread through his entire body. "Yesterday hit home because even with my good arm, I couldn't squeeze a peg together."Darryn can hardly walk, he struggles to speak and is having trouble breathing. Jak: "It might make him really sick and die.""Holding onto a toothbrush is like holding on to a brick."said Darren

The most basic tasks are now impossible and Jak's help has become even more crucial. A heavy burden to bear for a boy who's just 10."He's a little hero. I can't imagine what it would be like to be a child of that age to have to do what he has to do." Said Shelia Richards Jak is there to fill in where Darryn's body fails him. Seven days a week, he keeps the household running mand does jobs most kids would walk away from.

Neighbour, Sheila Richards, sees the heartbreaking reality, everyday. "I've never heard one complaint from him at all." He just knows the little things that are happening with me now and he steps in and takes over. This damn mongrel disease, it just keeps taking every muscle away from me." Said Darren.

Dr. McSwan has been Darryn's doctor since he was diagnosed almost 2 years ago. "There's no cure for it, the best we can hope for is to slow the progression of the disease."No one can predict exactly how long he has left.You know where it's headed you know where it's going to end and Darryn does too and that's the hard thing about it , there's no hope with it." DR. McSwan says.

But hope is all they have left

and in the face of adversity, Jak is stronger than ever."He's just growing up everyday. For a ten-year-old kid, it's pretty amazing. Said Darren. Every time he finishes putting my T-shirt on, I always give him that hug and tell him I love him and thank him."

"It doesn't affect your ability to think, it doesn't affect your mind at all. All it does it take away your body's ability to do those things that you want it to and that can be incredibly frustrating." DR. McSwan While Jak's at school, Darryn has professional carers come several days a week,

for now, he'd prefer keep his personal life private.

I'm not ready for them to physically help me in the shower and my personal needs." Said Darren."I know I'm only looking at a month or two and I'm totally reliant on someone being here." said Darren.But until that day, Darryn is desperate to keep his dignity for as long as he can.Not being there when his father falls is Jak's worst fear. "I'm worried he'll have an accident when I'm not there."It's another cruel loss of confidence. "To Dad, I will be always there for you, no matter what, forever. Thank you for being my Dad. I love you Dad." Says Jak. "I always get upset looking at that." Says Darren.

"Both of them provide support for one another and Darryn's courage in the face of a terrible disease is phenomenal, really." Dr Mc Swan. And they shouldn't. Words cannot change the inescapable and when that happens, Jak will live with his mum. Until that moment, he'll stand by his dad until the end. "I can spend my all my life with mum and I just want to spend my life with dad."

"He's saying at the moment is that he wants to be with me while in my short life and that he can be with his mother in years to come, but he just wants to spend the quality of time with me at the moment and that was pretty touching from a ten-year-old boy. Oh, yeah, he's my best mate. He is, totally lost without him." Darren said. "I love him… " says Jak There are 2.6 million unpaid family carers in Australia and carer's week finishes up on Sunday.

Carer Line 1800 242 636 (free call except from mobile phones. Mobile calls at mobile rates).

www.carersnsw.asn.au

www.carersaustralia.com.au/