Salt of the Earth: Mal Ward

By Dan Hutton on April 29, 2016 in People

When Mal Ward found out that his son, Johnno, was seriously ill with childhood liver disease, he made a decision: rather than sit around feeling sorry for himself, he would start fundraising for the very people that were trying to keep his boy and others alive.

Unfortunately Johnno lost his battle in 2008, but that hasn’t stopped Mal from continuing to dedicate himself to helping sick children through his Forever Johnno charity, which organisers a fundraiser in May and a Christmas present drive in December each year.

We caught up with Mal, a largely unsung, salt of the earth local hero, during the month…

Where are you originally from?
I’m originally from Leeton. It’s the entertainment capital of Australia. It’s a beautiful little town in the Riverina, about seven hours away from Sydney. I lived on the Gold Coast for a while too, and I lived overseas for three years, then I came to Sydney in 1994.

What do you love about the Eastern Suburbs?
The beach. Well, I love Coogee Beach. It was my son Johnno’s favourite spot, and I used to love going there with him and my other son Charlie. I still love going down there. I love that strip of shops and little cafes in Coogee Bay Road. There are a lot of country people around there, so I don’t find it as wanky as some other parts of the Eastern Suburbs.

Is there anything about the area that gets your goat?
There are quite a few Eastern Suburbs wankers. They’ve got money or whatever, which means nothing to me, and they think it makes them somehow superior. I don’t like fake people. I don’t like people who think they’re somebody special, whether it’s because od their wealth or status or whatever. There are a few of them about, but I try to ignore that.

You’re the brains and some of the brawn behind the Forever Johnno charity, can you tell us a bit about Forever Johnno?
My son, John, was born in 1999, and he was born with a liver disease, which was called Alpha One Antitrypsin Deficiency. It’s a genetic disease. Kids can have it and be okay for the rest of their life, or they can be on medication, or in the worst case scenario they have to have a liver transplant, which is the group which John fell into, unfortunately. We started a fundraiser in 2000 to raise money for kids like Johnno. We decided to do a fundraiser for the Clancy Ward, which is the liver transplant unit at Westmead Children’s Hospital. That was the start of it.

What does Forever Johnno do now?
We’ve just continued on from that. For a couple of years there we had two fundraisers per year, but we were really just taxing all our friends and contacts too much, so we went back to one a year. Now it’s in May every year and has been for the last 15 years. I think the first one raised about $3,000, and now we consistently aim for the $10,000 mark. The more we can get, the more the hospital can buy things, but it’s about more than money. It’s about community getting together, and about John’s name being out there, and remembering him. I have people ringing up saying, “When’s your Johnno do on?” They’re saying his name to me without any kind of silence. There’s none of that ‘don’t mention his son because his son died and that might make him sad’ silence.

You also do a Christmas present drive in December, don’t you?
That’s correct, and that started in 2008. John passed away on August 29, 2008 and Christmas was a tough time. It was only a couple months after he’d passed and I thought ‘I want to do something’. I didn’t want to wait until the raffle in May to do something. I thought ‘why don’t we do something for Christmas, for the sick kids in hospital?’ I knew how hard it was with him being out there and spending Christmas in hospital, so I did a little rally up and we got 160 presents that first year. Now we get about 1,000 presents each year in Sydney, plus we also drive in Melbourne, so we get around 1,400 presents donated between the two. In Sydney we split the presents between Westmead and Sydney Children’s Hospital, and a thousand presents covers every single kid in both hospitals, plus siblings.

Was it hard for you doing that so soon after John had passed away? Did it help you deal with what was obviously a tough situation?
Yes, it did. I was a bit lost then, I think, and I just thought, ‘I want to do something. I want John’s name out there. I don’t want to wait until May until the next thing’s on’. People really got behind the Christmas present drive. It’s Christmas, and it’s presents, but it’s the directness that gets people in. People like putting a present under the tree and knowing that I’m going to take it directly to a sick kid.

When is the next fundraiser on?
It is on Friday, May 20, at the Coogee Bay Hotel, in the front bar. It’s open to the public – the more the merrier. It’s a raffle and you turn up and buy your tickets and have a few beers. There are also auction items that you can bid on. I remember last year, there was a group of random blokes up from somewhere on a cricket trip, and they all joined in and they loved it. They won two or three prizes, too. Anyone can donate to the event too. If you’ve got a small business and you want to donate, we’ll give you a good plug on the night. You can feel good that you’re doing something charitable and your business will get a lift, hopefully.

You’ve had a number of celebrities come out to support the event in the past too, haven’t you?
Yeah, we have. The famous Dr Chris Brown, the Bondi Vet, for example. He was there last year. I think he’s been down three times, and he’s been great. Plus we’ve had plenty of football players and coaches over the years, like Laurie Daley, and there are always a few of the Australia’s Next Top Model girls, too. A bunch of them turn up nearly every year. A bit of beauty doesn’t hurt the occasion at all. We’ve also had some of the Bondi Rescue boys come down. It always helps to have a celeb. I don’t know who most of them are half the time, because I don’t watch any TV, but it’s great that they come because it adds a bit of presence.

Can you tell us a little bit more about childhood liver disease?
There are a few different types. There’s Alpha One Antitrypsin, which is what Johnno had. Basically in people’s genetic make-up; you are an MM, an MZ, or a ZZ, and the Z gene is the bad gene. You can have the Z gene and still be okay; it’s the luck of the draw and Johnno had none. He got the ZZ gene and basically your liver fails, and it won’t regenerate. He had to have a transplant when he was twenty months old. We thought, or hoped, that he was going to have a normal life after that, but that transplant failed when he was about seven, then he had to have another one and he had all sorts of complications with the second transplant and it didn’t take. He came good for a little while, six months or something, but it never took and they didn’t want to have a third transplant because it would’ve just too much for him to take.

What was it like waiting on the donor list for a viable liver?
That was hard; it was tough times. He had to have so many tests to go on the list, then the call can come at any time. The biggest fear then is that the call doesn’t come, his liver fails and you lose him before he even gets a chance. We were lucky. When you get the call you’re sort of think ‘this is going to fix him’, but there’s no guarantee. Operations are traumatic. After that there’s the reality that it’s a whole other roller coaster of ‘is he going to be okay now?’ He was, for a few years. For a while he got a fairly normal life. He was playing soccer and we have some great photos of him doing what little boys do with a big smile on his face. That said, I always thought in the back of my mind, ‘how long will this last?’ I’m a very positive person, and I didn’t want to think that way, but I did.

Would you recommend that everyone tick the organ donation box when renewing their driver’s licence?
Definitely, but I don’t think ticking that box is enough. It’s not binding. You need to go and register for organ donation (visit donorregister.gov.au to register online, call 1800 777 203, or visit a Medicare Service Centre). With the consent box on your licence, a parent or family member can still overrule it. They can say, “No, we don’t want to give you any organs.” So really, if you want to be an organ donor and you’re serious about it you need to talk to your family and say, “Listen, if something happens to me, I want this to happen.” It can save a lot of other lives.

Can you describe what it’s like being the parent of a sick little boy who’s spending a lot of time in hospital?
It’s the worst ever. Having no control over it is the hardest bit. You feel so useless, and helpless. The doctors tell you what they’re doing, and you trust that these people know what they’re doing and that they’re doing the best thing for your child. You’re in and out of hospital, and there are screams and pain, and blood tests and needles. Johnno’s veins wouldn’t come up because he’d had too many blood tests. Things like that are really hard to watch when there’s nothing you can do to help. It’s heart breaking.

Johnno was the bravest kid; do you still take inspiration from his courage?
Yes, massively. I still to this day think about different things that John said, or the way he was. He was a really loving, optimistic kid. He got dealt all this crap, and he still had a smile. There are a couple of things I always remember about Johnno. In 2008, in May, he was in and out of hospital a lot and I said, “We had your fundraiser last night mate.” He said, “Oh, how’d it go, Dad?” I said, “Really good, mate; we raised a lot of money for the hospital; it was great.” I told him about all his mates who were there, and all the people who came. He had a little think, and with a big smile on his face he goes, “Were they all there for me, Dad?” I said, “Yeah, they were.” He took it all in and I could see him thinking, ‘wow, I can’t believe they’re doing all that for me’. He was a special kid.

You’ve got another son, Charlie, who is younger than Johnno. Has he helped you deal with the pain of losing a child?
Yeah, he has. Charlie was four and a half when John died. He was very young. He was always the little joker, and when John was in hospital he’d go in there and always put a smile on John’s face. He’d just do something silly. He’d pick up one of the toys and fling it across the room and I’d say, “Charlie you’re in a hospital, settle down,” but he couldn’t settle down because he was just mad, and John would sit there laughing his head off looking at Charlie going nuts, and he’d laugh at me trying to calm him down. He was good for John, and he’s been good for me afterwards. He still talks about John, and he still misses him. He said once, “Tell me a John story, Dad, because my memories of him are fading.” We still talk about John to keep that memory alive. It would have been hard without him, because it’d be just me then, wouldn’t it?

Nursing is one of the lowest paid professions in the country. Can you tell us a bit about the work that the nurses out of Westmead do for sick kids and their families, and what they did for you guys and Johnno?
The nurses out there are incredible and I just don’t know how they do it. You’ve got to be a very special person to be a nurse. The stuff they see, and the tragedy they deal with, and they somehow manage stay so calm. They’re so loving and they take these kids under their wings like they’re their own. Then you see them, like at John’s funeral, and you wonder how many funerals of kids they have to go to. As I announce every May when I have my fundraiser, we have celebrities and football stars and the models in attendance, but the real VIPs are the nurses.

Can you describe to some degree what it’s like to lose a child?
I was at a talk with this professor bloke who said, “The grieving process is usually four to six weeks, whereas with a child it’s a lifetime.” With a child, it’s forever. I still miss Johnno. It’s eight years now and it’ll never change. It eases a little bit, of course, but it’s very hard with a child. No matter what I say or what your readers read, unless they’ve lost a child, they don’t have a clue. I’m not trying to say you can never understand how I feel. I don’t want you to. I don’t want anyone to, because if you do, you’ve lost a child. John died when he was nine, and you grieve for yourself and the rest of the family because he’s gone and you don’t have him anymore. But you also grieve for what he missed out on. He’s never had a life. He had nine years. That’s why I struggle with kids dying. They never got that chance. No matter how good it is, or how bad it is, everyone deserves to experience life. That said, I’m not into ‘woe is me’ and that’s why I have Forever Johnno. That’s why I try to raise money.

There’s a lot of media attention given to the struggles of single mothers; what’s it like being a single father living in the Eastern Suburbs?
It’s tough. I’m self-employed and battling it out alone. Like everyone, you’ve got bills and commitments and you’ve got to try and survive and give your kids a life. The whole Johnno thing puts a whole different perspective on life. Since John died I know I see everything differently. I’m not trying to get a mansion and a swimming pool. I don’t need that life. As long as I can look after Charlie, do the fundraisers, and help out where I can with my barbecue business, that to me is success.

Is it true you’re a bit embarrassed about appearing on the cover of The Beast?
Very true. To be honest, if John hadn’t gotten sick I don’t know if I would have done all this fundraising. In some circumstances you’ve just got to step up. That doesn’t make me a hero or a legend or anything like that. I just want to try and do something for John. Maybe I seem to be helping a lot of people, but maybe I’m helping myself just as much by keeping his memory alive. That’s why Forever Johnno is so wonderful. I have mates who say to other mates, “Come on, we’ve got to go up to Mal’s young bloke’s thing,” so John’s still very much alive in everyone’s thoughts because of that. I think the whole Johnno thing has brought a lot of my old mates back together, and it’s even meant that I’ve made new mates. I like to think that John’s done all that.

Besides organising fundraisers and Christmas present drivers, you also run your own business, Great Aussie Barbecue; can you tell us about that?
Yep, it’s called Great Aussie Barbecue, proudly brought to you by Wardy and sons since 1995. Basically, I’m a mobile caterer. Everyone asks, “Oh, do you do spit roasts?” No, I don’t do spit roasts; I do barbecue catering. If you’ve got a 21st or a wedding or any function and you usually get Uncle Harry to cook the barbie and Uncle Harry gets pissed and burns the shit out of everything and you think ‘why do we get him every year?’, that’s when Wardy comes into play. I’ll bring my barbecue, a professional set-up, do all the salads and give everyone a nice feed. I do corporate events too.

How long do you think you’ll continue to hold your annual raffle and Christmas present drive?
Until the day I die, I hope. I don’t want it to ever end. There are sick kids to help, and that will never change, so I’d like to think that we can just keep doing it every year.

Why should people dip into their pockets for your cause?
Because it helps sick kids, and as I’ve said all along I think every kid deserves to be an adult, and everyone deserves to have a life and some memories. It’s also for those who don’t get to grow up. If you go out to the hospital and you see sick kids you’ll understand what it means and what the money goes towards. You’ll see what we’ve bought, the difference we’ve made, the televisions, the X-Boxes, the games, all the medical equipment. Over the last fifteen years Forever Johnno has probably raised well over a hundred thousand dollars. No one gets paid to do it. The money goes straight to helping the kids.

In an ideal world, what does the future hold for Mal Ward?
I just want to keep living, keep running Forever Johnno, keep raising money, and keep barbecuing. And I’d like to get Charlie through school and see him become a fine young man and do what he wants to do in life. That’s all I want. Nothing special.