Browny: I’ve never met a braver kid than my mate, Otto

Otto Azzopardi loves playing footy. He’s good at it, too. But often after games he is in agony or wheelchair bound due to a cruel, painful and heartbreaking condition. Luckily, he’s got a few big names in his corner who are fighting for a cure

Jonathan Brown, commentator, ex-footy player, and Nina Azzopardi and her son Otto. Browny and Otto are good mates and the families are close. Otto suffers from a very rare skin condition called EB and Browny is his mentor. Picture; Wayne Taylor

Jonathan Brown has seen plenty of courage on the footy field. He’s shown a fair bit himself.

But he’s rarely seen anything compared to his little mate Otto.

The larger than life former Brisbane Lions champion and now leading footy commentator gets emotional when discussing his tight friendship with the 14 year old, who suffers from the rare, painful and little known skin condition epidermolysis bullosa (EB).

“I’ve been fortunate enough to meet a lot of sick kids on the journey, but none are braver than Otto, that’s for sure,” Brown says.

“He’s just tremendous. His attitude on life. How optimistic he is. He just has a crack, and that’s why I love him.”

EB typically affects babies, toddlers and young children, causing extremely fragile skin that can be damaged at the slightest touch. It results in painful blisters and wounds.

Essentially, children like Otto Azzopardi are born without the glue that binds skin together.

Any level of exertion can lead the skin to blister or break. At this stage, there is no treatment or cure.

For Otto, this means a daily ritual of baths, lancing of his blisters and bandages. Add to that truckloads of pain. And patience.

A keen and talented footballer, he will often be bedridden for days in pain after a game, or confined to a wheelchair.

The condition gets a lot worse in the heat, so in the summer months he can be stuck in the wheelchair for weeks on end.

Last year he fell off his bike and had to have surgery; most of the skin on his hand simply came away.

Mum Nina also suffers from the disease. Both have the mildest form, known as simplex; mild in the sense that they have to live with it, but it is not terminal. The most severe form is dystrophic EB, which includes internal blistering in the stomach, oesophagus, and bladder (see separate report).

For the latter, the life expectancy is anywhere from infancy to about 30.

Jonathan Brown with Nina Azzopardi and her son Otto. Browny and Otto are good mates and the families are close. Otto suffers from a very rare skin condition called EB. Picture: Wayne Taylor

Nina was sitting at the kitchen table about eight weeks after Otto was born. She and husband Jeff had thought deeply about having kids given Nina’s condition, but decided it was worth the risk. They wanted a family, after all.

Their first two boys, Ari and Nicholas, were born without EB. For a while, they thought they’d beaten the odds. Then along came Otto. Bright, bubbly. Perfect.

The first few weeks were a dream, then one morning Nina was preparing breakfast for the family when she looked down and saw a blister on Otto’s tiny hand. One small blister. Her heart sank. In a split second, she just knew.

“They diagnosed it quickly and I think it’s fair to say that that was a pretty dark time of my life,” she says. “I developed postnatal depression pretty quickly after that and got some supports in place. But I will say that it’s almost like, as a parent, you never leave the newborn stage because your heart’s always in your mouth.”

So began a routine of which Nina was all too familiar; trips to hospital, operations, day to day disciplined management. Patience. Anxiety. Tears. Uncertainty. The only real upside was that she knew what to expect, so could help her son navigate what lay ahead.

From there, they have tried to build as normal a life as possible. By and large, she says, they have succeeded. Nina works as Beyond Blue’s head of people and culture, while Otto is going through school at Carey Baptist Grammar in Kew. However, he can’t take public transport, lest he be bumped by other commuters, and needs to be dropped off every day, sometimes with a wheelchair, sometimes with crutches, but he has been warmly embraced by the school community.

“He’s got this incredible group of friends who just support him so much,” Nina says. “They normalise it for him, for something that is not very normal at all. He’s just got a wonderful personality. He’s very outgoing, very personable, really friendly and he kind of doesn’t let it get in the way.”

Otto’s mates are always on hand if he needs a wheelchair. Picture: supplied

Otto is known for his positivity and upbeat personality. Picture: supplied

The mates and their parents all got together before a recent footy camp to Darwin to work out a plan if everything went pear-shaped.

Unfortunately it did; the heat and humidity were simply too much and Otto was, again, stuck in a wheelchair. He was devastated.

His friends mean the world to him and he will push himself to extremes to be in their company.

“Connections are just so important to him,” Nina says. “He’ll push to play golf with his mates. So they’ll go on a golf course and by the end of the golf session, he’ll be crawling up to the clubhouse, literally on his hands and knees crawling, because he can’t walk.”

And, of all his mates, the closest is Olivia, Jonathan Brown’s daughter.

Blistering feet.

The bandages to cover the wounds.

When Brown first saw Olivia pushing her best mate around in a wheelchair during primary school, he thought the poor kid had broken his leg. It was only as their friendship developed that he started to learn about the condition.

“Liv told me about it and I’d never heard of it,” Brown says. “Obviously I was very proud of my daughter for wanting to help, but then I started to dig a little bit deeper to find out what this condition was. We got to know the family and have become really close with them.

“I was really just inspired to help where I could just because of Otto’s courage.

“He’s just trying to be a kid like all the rest of his mates, playing footy and basketball, and all that sort of stuff, but you knew, at the end of the day, he had to pay a price.”

Nina says the attitude and empathy displayed by Olivia belies her young years. It has also helped Otto navigate a journey that, while gruelling and cruel, is less isolating than it otherwise could have been.

“She’s never cared what anybody else thought about the friendship or about what she was doing for him,” Nina says. “From time to time they did come up against kids teasing them either about the friendship or about the condition, but she’s a very empathetic person, very mature for her age. And it never worried her.”

Now the Brown and Azzopardi families and the wider EB community are on a mission to raise awareness and find a cure for a disease that affects about 1000 people in Australia and more than 500,000 worldwide, and is the focus of a conference and AFL match in Adelaide next week. Nina says the friendship and support from Brown, Olivia and their family has meant the world. Throughout it all, both families have become inseparable and Brown even ran the New York marathon in 2019 in Otto’s honour (he surprised himself by running it in a tick over three hours).

Otto is used to a daily ritual of baths and bandaging. Picture: supplied

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“Browny’s been incredible,” Nina says. “Otto doesn’t get his fame or anything like that, because he’s always been such a big part of his world. He feels pretty bulletproof when he’s around him. I mean, Browny’s big in stature, big in personality, and he’s got a heart, which is just huge. And he’s always there. He’s so incredibly selfless. Despite all the stuff he has on, he’ll drop anything or just call me to see what I need. It’s just the way he is. It’s part of his makeup, it’s quite extraordinary.”

Brown, for his part, just wants to see Otto and kids who suffer EB have something akin to a normal childhood, like he enjoyed.

“They need to be able to go and play with their mates, to be able to go and have fun at school every day and at the end of the day not have to go through that suffering,” Brown says.

He says the courage they show is humbling – and something from which we could all learn.

“The determination Otto shows to get through life is inspiring, really just trying to be a normal kid like everyone else,” he says. “And I think that’s an endearing quality I’ve found meeting all the kids and people affected by EB, it’s just how positive they are. They just want to live a normal life like all the other kids. The positivity and smiles on their faces is what draws you to them. They’re built with an internal toughness from day dot. They know they’ve been dealt this hand but every kid you meet you know is just getting on with life. And I know behind closed doors it’s traumatic and all that stuff but, out in the open, the brave face they put on, it’s just infectious.”

Otto on the footy field; he dreams of one day being drafted. Picture: Supplied

Browny in his prime for the Lions. Picture: Tony McDonough

The ultimate goal for everyone is to find a cure. For Otto, this would help him at least pursue his dream of following his big mate into the AFL. “He says to me I hope they find a cure by the time I get drafted,” Nina says.

Brown says he’d love to see his little mate line up for the Bombers, who Otto supports, just so he can be swayed to watch the replay of the 2001 Grand Final against Brisbane (the Lions won and it was the first of four consecutive grand final appearances. Brown was on fire with 16 disposals, five marks and two goals). “I’ve offered to watch it with him a few times, but he hasn’t taken me up on it yet,” Brown says, laughing. ■