The Undiagnosed Disease Program: The Search For a Diagnosis

As Heidi McNair made the long journey to Perth for another day of gruelling tests and appointments for her daughter Jessica, their tired, beat-up Daewoo Lanos, with the leaky roof and sticky clutch, began to stall. 

The spluttering back and forth motion of the vehicle – an upsetting imitation of McNair’s state of mind at the time – was enough to force her to the emergency lane of the freeway where the car rolled to a stop. As her daughter rested quietly in the back, McNair unbuckled her seatbelt, climbed from the driver’s seat, sat alone on the asphalt, and wept.

She called her mum from the side of the road. “I can’t do this anymore, it’s too hard. Why me? Why us?”

You see, Heidi and Jessica have a unique story, a collection of stories actually. About a girl who wasn’t expected to live more than a few days. A girl who was given no chance of walking or talking. A girl who is significantly undersized for her age. A girl who suffers from a disease that cannot be diagnosed.

Jessica Jackson at her home in Baldivis

Jessica is a medical mystery. Just ask Gareth Baynam.

Baynam is the clinical geneticist behind the Undiagnosed Disease Program. The UDP is an Australian-first initiative aimed at uncovering and ultimately diagnosing children who have unknown or rare diseases. Unfortunately, Jess’s case has him and his team still searching for answers.

“We really wish we could get a diagnosis for Jess,” he says. “We are still following up some leads. We are reviewing our gene test data following a suggestion from a doctor in the USA. We are also reviewing information with the aid of our knowledge management platform called ‘Patient Archive’. This is a new approach to share information with other experts around the world, in the hope we get an answer for Jess,” he says.

Heidi McNair doesn’t seem as hopeful.

“Everyone dreams of having the perfect child, maybe the next Bonds baby competition winner. No one wants their child to endure feeding tubes and hospital stays, or carry the scars from treatment - both physical and mental - around for the rest of their life. I'd just love an answer now. But I don’t think we’ll ever get one,” McNair says.

Unfortunately, Jess's story is only one example of the many which share a disturbingly common story. Each unique in its own right, but remaining loyal to the same overarching themes - frustration, anguish and the unknown.

The UDP was established in Perth in 2016, with some telling statistics supporting their work. Like how there are enough children with rare diseases in WA that if you got them all together, they would fill the new 60,000 seat Perth Stadium. Or that a third of rare disease sufferers have waited somewhere between 5 and 10 years for an accurate diagnosis. Most severe chronic undiagnosed diseases are rare diseases.

A handwritten note to UDP families in WA from Molly Meldrum. Photo provided by Gareth Baynam

Baynam, the Director of the UDP and Australia’s International UDP Network, is trying to change that. A cheerful man and father to two children, his wide smile and endearing eyes offer a point of difference from the sometimes glazed over, expressionless facades of many medical professionals. We talk about his beacon of hope: the UDP.

It was established as a paediatric-based program offered only to seriously ill children. "It aims to find diagnoses for children with long-standing severe and complex conditions who have remained undiagnosed after lengthy testing and medical evaluations for nameless diseases that are devastating their lives. A diagnosis opens the door to treatment,” he says.

The program has been running for almost two years, has seen nearly 20 patients, and has a successful diagnosis rate of around 50%, a number Baynam admits is a bit of a surprise. A welcome one though, and a platform to build on.

And the surprises don’t stop there.

The UDP is laying the foundations to expand with the transitional Undiagnosed Disease Program aiming to see patients between the ages of 16 and 25 from early next year. Baynam will direct the program, with experienced senior medical researcher Lauren Dreyer signing on as program manager. Dreyer is based at Linear Clinical Research in Nedlands. I find her tucked away in a small office, and quickly notice a stark contradiction between her workspace and the enormity of the plans and ambitions she has for the program.

During our discussion about the UDP and prospective tUDP, she mentions a Formula One racing analogy that intrigues me. “Essentially the UDP is the peak of what we’re capable of in the field of genetics, just like Formula One is at the forefront of the motor vehicle industry,” she says. I push for further clarification of this comparison, as I’m well aware many Australians knowledge of the Formula One landscape extends only as far as the WA bloke who drinks beer from his own shoe after races.

“Well, the hope is the research done in the UDP program will trickle down into various medical networks around Australia and even the world, like it would if Formula One made a breakthrough in the car industry,” she explains.

But with great heights, come harrowing depths. That’s where the undiagnosed sadly wait. “We acknowledge that we will not get a diagnosis for all children and we hope that if we do not, we still improve people's medical care and create some beneficial connections that help people to live the best lives possible,” Baynam says.

So, will the doors ever close on the search for Jess’s diagnosis?

Not if you ask Gareth Baynam.

Video courtesy of the ABC

The Transition - Who Am I Really?

It was famous U.S. fashionista Derek Zoolander who said “Who Am I?” as he peered poignantly into a puddle that bore his own reflection in the 2001 cult hit classic Zoolander, only moments after losing the Male Model of the Year award to Hansel.

In defeat, he lost his identity. If he wasn’t the best model on the planet anymore, then who the hell was he? Now I know the movie jests, but I have seriously asked myself the same question several times in the last 12 months during ‘the transition’.

The transition I speak of is the well-travelled journey of elite sportspeople from a fast-moving lifestyle that encompasses plenty of new and exciting, twists, turns and challenges, to a life of…well…not those things.

Long after the bright lights fade, and the ‘oohs’ and ‘aahs’ of the feverish crowds extinguish, and the body finally relents to the years of wear and tear, the mind still flickers…

“Who am I now?” It asks.

And it’s in the quieter moments, usually after retiring or being dropped from something you have worked your whole life to obtain, that the pressures and struggles of establishing your new identity gain momentum.

All of a sudden, a huge chunk of your identity, purpose and sense of belonging has been removed. A life that took not moments, not days, not weeks, but years of effort and devotion is gone, with nothing but a set of ‘guidelines’ and a good luck email left to help you overcome the slippery slopes of ‘the transition’.

Normal, everyday questions for sports people become obsolete. How much rest time do we have today? Where is today’s recovery session? I wonder if the game debrief will involve me? Why did I let that ball go? Who is talking about my performance, and on what social media platform? Seriously though, rest time is a thing. I still need rest time, and the ‘boyfriend chair’ at David Jones has become a serious enabler for me over this last year.

And the questions posed above usually, and stupidly, arise before we even get started on the intricacies and important issues of family life, work dilemmas, study clashes, health problems and everything else life can muster.

Lauren Jackson revealed earlier this year on SBS's Insight and the ABC's Four Corners the impact retirement had on her mental health. She admitted the sudden change in people's attitudes towards her while moving from being an elite athlete one day to a retired sports star the next took a toll on her. She said it felt like she had been "put out to pasture". I echo her sentiment and wonder what Basketball Australia is doing now that the cameras are turned off and Jackson has retreated to her new life.

It is a year since I last played hockey for Australia, yet I still deal with issues that arose during my time with the program.

I played at the top level with severe and chronic achilles tendonitis in the latter stages of my career. I was administered cortisone injection after cortisone injection in order to play and represent Australia where needed, but away from the televised events, I limped around the training ground for 18 months struggling from contest to contest.

I found the cortisone worked for a few weeks at a time, until the pain finally returned. It wasn’t a happy place to exist. I was also diagnosed with a generalised anxiety around the same time I was dealing with the achilles issue, something that can’t be attributed to my injury, but is well and truly related now.

I still wake up every morning and walk down my hallway in pain; I struggle to chase my 6-month old puppy around; I haven’t been able to play basketball, a love of my life, for over a year; and couldn’t wear Havaianas, Nikes or boots for the entire year Olympic preparation.

These might seem like trivial things to some, but one day it’s not unforeseeable that I could replace ‘dog’ with kids. ‘Basketball’ with walking. And ‘Entire Olympic preparation’ with entire life. I was receiving treatment and guidance for my ailment, but largely from a very helpful friend and ex-team physio.

Now that I’ve joined the ‘real’ world I expect those ‘mates-rates’ favours eventually to run out. Services that were supplemented before now cost money, and the reality is I have to earn a living somehow.

At the moment, I work casually doing brand development work for my hockey equipment sponsor Voodoo. I teach hockey to kids at Guildford Grammar School. I am at university two days a week (I graduate at the end of this year), I recently finished an internship at the Western Force, and I freelance write a bit.

Thankfully, money has never been a decisive or driving factor in my life. I’ve volunteered or worked unpaid at numerous places around Perth, always chasing an experience over a pay cheque.

I returned to competitive sport in June of this year, playing first grade club hockey for Fremantle in the Perth Hockey Competition.

Why? Because nothing can replace or replicate the joy that sport (and in particular, hockey with Freo) brings to my life. A sense of belonging, a family environment, a brotherhood of mates, a physical and mental challenge each and every week, and a home away from home.

I am still met with comments about looking ‘laboured’ or ‘sluggish’ at times. Another clip of the confidence, and more strain on the body and mind. Lucky I was quite fast before my injury, so now I just run at more of a regular pace. 

I can’t understand or accept a world where this is normal. Where those types of experiences are deemed acceptable because they adhere to the sports ‘guidelines’. And there are many others who have bravely attempted to navigate their way through the transition before, mostly without help, and without the acceptable level of care from their respective sporting bodies.

Unfortunately, and as we’ve seen publicly in the last 12 months, some won’t transition. Former Wallaby and family man Dan Vickerman took his own life earlier this year, after a long battle with what we can only assume was his own mind.

Vickerman was a poster boy for professional sportspeople who had successfully transitioned into life after sport, or so we all thought.

He chaired a joint Australian Rugby Union and Rugby Union Players Association committee, and had successfully carved out a career in property development with promotion to a role of funds manager.

Dan had arguably got through the worst of it. He has navigated his trickiest assignment, the initial few years post-retirement where you attempt to carve out a new life. And not a mediocre life either, one that hopefully resembles the remarkable and extraordinary sporting life you lived only years earlier.

The life that teaches you to reach for the stars; to push the boundaries of what you deem possible; to fight and grind your way through numerous ailments and setbacks; to endure the heartache of defeat; appreciate the fruits of victory; and be thankful, not bitter, about the sacrifices you made to get create those moments. Dan, seemingly, had done it.

And then the unthinkable happened. Dan committed suicide, aged 37. Dan, who “always had a plan”, was gone.

So who am I? At the very least, I’m a guy who doesn’t want this to happen to anyone else. I’m a guy that speaks openly and candidly, not only about my own struggles, but the struggles of others, in the hope a more balanced and well-rounded support program can be developed and introduced by the nations sporting bodies.

I’m a guy trying to educate, inform and engage people on the serious issues and challenges being posed to an industry that not only brings us some of the most inspiring and uplifting stories of our time, but some of the darkest and most disturbing as well.

So although I may not have found my true identity yet, I am hell bent on ensuring the next generation of sportspeople know exactly where to look for theirs.

Titanium I – Ken Howes

“I left work straightaway, and when I got home I couldn’t find him, I was yelling out and thought he must have been out the back, and there he was, sitting up there. And you look at someone when they’ve done that and it takes a while to sink in. Hang on a minute I thought, then I pushed his head, I kicked him, I thought he was just mucking around, then I started screaming. Ken was dead”.

That’s how Ken Howes wife Tania remembers the morning of the 8^th of September, 2016. That was the day her husband took his own life. He was 57 years old.

Ken Howes was a National Park Ranger living in Merriden, a small town located in the central wheat belt region of Western Australia. He was a man’s man, tough as nails and born in an era where you just put up and shut up.

Ken and Tania married 31 years ago

He liked his job, but it definitely ground on him at times, like most jobs do I guess. He married his beautiful wife Tania 31 years ago after a brief courtship, and they shared the love of a good time, a good drink and a good laugh.

Tania seems like your typical Mum. Kind of heart, loving and affectionate, a bit louder and vivacious on the booze like most Mums get, and even though I could sense a feeling of vulnerability, she possessed the kind of warm embrace you’re always happy to nestle into as a child. Ken and Tania also have two boys, Jarrad, 31 and Braedon, 28. 

Jarrad is a skinny kid, with shaggy hair that falls down over his face, covering a cheeky grin of a boy that can be known to get into a bit of mischief. Braedon is a stockier, bull of a fella. Built a bit more like his old man, but with similar facial features to Jarrad, Braedon is wise beyond his years.

Both boys have dark eyes that seem to squeeze narrower the happier they are, and after spending some time with them recently, I can vouch for them both being generous, loving, and caring souls who just want what’s best for those closest to them. Pretty admirable qualities.

Jarrads cheeky grin and Braedon having a laugh

Ken was the vice president of the Mid-West Easyriders Motorcycle Chapter. The Easyriders are basically a drinking club that rides bikes, according to Jarrad. They do charity rides, holiday trips and just enjoy each other’s company on the road. Ken also suffered from depression. 

It was a Thursday morning at about 7:45am when Tania, dressed and ready to head off to work, got into a heated discussion with Ken about ‘nothing in particular’. “I feel really bad because the last time I saw him I walked out the door, he was sitting there in his work clothes, I looked at him and he looked back at me, but said nothing, so I turned, shut the door and left, because I was over his shit,” she said.

By 8:30am Tania received a call from Ken’s work saying he hadn’t shown up. She thought he must have had a fall or been a bit crook so she took off home to make sure everything was OK, and that’s when she found Ken.

“He was still warm,” she said. “I just walked through the door, expecting him to have hurt himself or something and instead he was dead. I never expected in my wildest dreams to find him like that. And it was in that moment that it felt like my life ended.”

Australia's suicide rate is around the highest it has been for at least ten years. 

In 2015, 3,027 people ended their own lives in Australia.

That's 12.6 people in every 100,000.

That's more than eight people every single day.

One person every three hours.

People of all ages and all walks of life. Many just like Ken.

Once she began processing exactly what had happened, Tania’s attention quickly turned to her boys. “All I kept thinking was what am I going to tell my kids, I thought they would blame me. But the police took my phone before I could do anything. Kens phone as well,” Tania said.

The police said they had to go through her phone for messages and call data that might have tipped Ken over the edge.

The news was broken to Jarrad, the older of the two sons, via an unlikely source. “My uncle told me. I was even more worried when his name flashed up on my phone because he never calls me,” he said. “My uncle asked if I’d spoken to the Merredin police. He asked if I’d spoken to my mum. He couldn’t tell me what was happening, but after asking him for a while I finally got it out of him. I asked him if my Dad was OK and I’ll never forget his response, ‘no sorry mate, your dads dead’.

Younger brother Braedon failed to hear the news until later that day after missing call after call whilst at work. Like many people his age, Braedon didn’t answer a number that he didn’t recognise. He was busy at work, the same strange number kept calling and calling, and it wasn’t until family friend Chris ‘Happy’ Gilmore got hold of them that he learnt what had happened. A distressing and unbearable situation made even harder not knowing what their poor mother was thinking.

Tania still doesn’t have Ken’s phones back after weeks of asking, and it wasn’t until an honest conversation with one of the officers that she finally gave up trying to retrieve them. Police reportedly instructed Tania that the reason for the delay in the return of the phones was because ‘they have Kens brains through them and they have to be cleaned before we give them back’.

Ken died in the morning, so the house was off limits for most of the day, before Tania went back that night to get some clean clothes and bits and pieces.

One of the first things she encountered was Ken’s toothbrush. It had to go in the bin. Then she walked into the bedroom and his shoes were on the floor. She had no choice but to throw them out as well, along with his work clothes from that day, otherwise she said she’d ‘always be waiting for him to come back and put them on.’

She also couldn’t help but take a peek at the patio area. What she found was something that still haunts her. She spotted some mess, where Ken lay earlier, some blood that had obviously escaped the cleanup of the police, and had to ask someone else to come over and clean it up, for her own well being, and for fear the kids might see it when they arrived.

A friend of the families arrived promptly and tried to scrub away the remnants left on the ground. Another man, the same one that helped identify the body earlier in the day, arrived to help as well. Soon both men were cleaning, and sobbing, whilst they wiped clean the patch where their dear friend laid dead on only hours earlier – an action they must still struggle to comprehend to this day. Tania may not have made it well known, but she is eternally grateful to these two men for doing such a dastardly job.

The Howes family awoke Friday to a raft of new challenges, none moreso than the threat of post-traumatic stress disorder (PTSD). PTSD is a particular set of reactions that can develop in people who have been through a traumatic event. 

The boys, Jarrad and Braedon, with their Dad

For Jarrad, this type of behaviour seemed to set in straight away. Days had started rolling together. He would wake up and make a beeline for the fridge to grab a beer. He would sleep, a lot. Hours and hours in the middle of the day whilst his little girl went off to school. And he would keep calling his dad’s phone, just to hear his voice. ‘Hi, you’ve called Ken Howes’ phone, I can’t reach your call at the moment so leave a name and number, and I’ll get back to you shortly’.

“I just call to hear him because I forgot what he sounded like. I know that sounds kind of stupid but I don’t want to forget his voice, that’s why I call, to keep that memory in tact,” he said.

The fact his mother does the same thing means that thankfully Jarrad isn’t the only family member grieving in a similar way. “I was with him for 33 years and I couldn’t remember his voice after a few months,” Tania said.

“So I would call his phone to hear the voicemail as well. I thought I was losing it. It just kind of brings him back a little bit, because it feels like he is slipping away. I keep waiting for it to get easier but its not. To have someone sleeping next to you one night, and then be gone the next. Sometimes I will just sob because I want him to walk back through that door.”

For Braedon, the disappointment of losing his father led him down a different emotional path. “The anger I have for Dad at the moment is still so out of this world and hard to explain,” Braedon said. “We had so much planned in life from motorbike events to hunting trips. I was going to get my gun license just like Dad. I wish I could make a life size doll of him so I could just punch the shit out of it and take all my anger out,” he said.

Ken looking over his first granddaughter Sophie

He’s also upset that his Dad will miss out on spending time with his grandchildren. “I mean he will never get a chance to meet my kids if I have them, and he had such a good relationship with Jarrads oldest, Sophie, 10 now he won’t ever get to experience those moments again.” 

The truth about what happened to Ken is something that Jarrad has decided to withhold from his eldest daughter for the time being. “My little girl is dealing with it really weird. Sophie is only ten, and she’s smart, way smarter than me, but she doesn’t seem to want to talk about it or grieve. They were best friends, Dad and she. She’d run straight past Mum yelling out for Dad. We had to tell her Poppy was sick otherwise it would just mess her up and ruin her schooling,” Jarrad said. A heartbreaking conversation saved for another day.

You can tell the boys are both dealing with the tragedy in their own way. Jarrad wears his heart on his sleeve, he’s emotional, occasional destructive – not to anyone else, just himself – and will always ask the question ‘Why Dad?’ leaving you feeling like he has a slimmer of regret or a feeling that he missed out on some special moments with Ken.

Braedon on the other hand seems almost stoic in his attitude towards his father’s death. He is adamant in moving on with what he can control and takes solace knowing he bonded with his father over their joint love of bikes and the outdoors. More than anything I think he just misses his ‘best mate’.

Most recently for Tania, she’s been consumed by emotionally draining thoughts. “Not long ago for example I was going to work and I just thought ‘This really sucks’. Then I arrived at work and ended up bawling my eyes out and had to leave to come home,” she said.

“Other days I’m just pissed off at him. If he were still around, I’d say why were you so selfish? To the kids and me. I’d probably slap him. How bloody dare you do that? Especially when it could have been sorted out if we just talked”

It’s been that way for weeks now and she can’t understand why, every five minutes she wants to cry, or is angry, or upset, but why, after months of being without him does she seem to feel even worse now.

Me with the lovely Tania Howes

Tania still often feels the pressures of her different life now. She’s a mental illness sufferer herself, and has been on medication for the best part of 15 years, a situation made all the more difficult after Kens death.

“I just don’t know what to do sometimes. I get so much paperwork now after Kens death, I am inundated with all types of shit that I have no idea what to do with. Sometimes I think maybe he had the right idea, get away from all this stuff that I don’t know what to do with,” she said.

The suicide rate among those aged 55 to 64 years surged by 54 per cent in the 10 years to 2014, to 15.1 per 100,000. This rise was steeper among men in this age group – 58 per cent, compared to 50 per cent for women. A worrying sign for our aging population.

And one thing both boys agree on, that they are worried about their Mum.  “Mum has talked about killing herself because of dad, and that’s upsetting to hear. It breaks my heart to the point that I don’t know how to feel or how to act in life knowing I can’t help because I’m so far away,” Braedon said.

Jarrad was more perplexed by the admission from his mother, saying “Why on Earth would you be thinking that when you’ve seen how hard it’s been for us all after Dads death. I don’t want to lose my Mum as well,” he said. Before offering to go to counseling with his Mum in the hope they can both work through it together.

Tania said one of the most saddening things was that weeks before Ken died she said to him “What’s the matter?” “Nothing” he replied. She demanded he talk to her and he said ‘he just liked to keep things bottled up’.

Time has passed since that September day, and earlier this year an event held to honour the lives of both Ken and another past Margaret River Hockey Club player Stuart “Scar” Campbell, who also tragically took his own life late in 2016.

Spraypaint on the grass before the match

The club hosted the inaugural ‘Scarred for Life’ memorial match, where past Margaret River players and teams, as well as both families, friends and loved ones of both men took part.

It was then that I first learnt of the story. I was invited to attend to speak to the large crowd that had attended that day, and it was pretty early on in the piece when I first noticed the strain on the boys in particular, Jarrad and Braedon.

The match was about to begin, and club president Colin Fox was outlining the plan for the day, when Braedon kind of keeled over. Tears started flowing from his eyes, and brother Jarrad tapped him on the shoulder to make sure he was ok. Actually, it was more of a brotherly slap. A bit jovial, as I suspect both boys were struggling to understand how to tread their way through the day.

The match was played in good spirits, and afterwards, both families were involved in the presentation and settled in for a few drinks and some good country food. Tania seemed to enjoy the day, rekindling some lost friendships and meeting up with a lot of people that she hadn’t seen in years.

The 'Scarred For Life' charity game

But the weight of the world came crashing back down on the family once the lights dimmed, the barbie stopped sizzling, and the laughter and stories slowly disappeared into the night, especially for Tania and Jarrad.

Jarrad continued on a bit of a downward spiral after the charity game. He says the hardest part of his day is after he’s dropped Sophie off at school and returns home to an empty house where it is just he and his thoughts. A lot of the time, he’d just grab a beer, to take the edge off a bit you know. Or he’d lay on the couch and fall asleep again. Why?

“To escape reality for a little while,” he said. “Then I don’t have to remember the shit that’s happening. It’d just make me happy, even though I wasn’t. Especially when my mates came around, I felt like I was dragging them down. I really like the company.

“I don’t want to be a 31 year old alcoholic, but I want to be happy and fun. I want to take care of my two beautiful daughters, and I want my friends to think I’m good to be around. I know that I’m not helping the issue or fixing it by drinking, I’m just not confident enough to take that next step yet,” he said.

And Tania’s battle is compounded by her worry for both of her boys. “Jarrad’s got a bit more of a temper, that’s why I was more worried about him. Jarrad’s had a rough time of it for the last 10 years. He’s got a young girl, he’s a single dad, and has recently had another little baby.” Jarrad just seems to cop blow after blow and I’m not sure how much longer he can cope without saying ‘fuck this, I cant do it,’” she said. 

“Braedon doesn’t talk as much. Braedon just shoves it aside and gets on with it, like his father used to do,” Tania said. “He tend to worry about other people a lot more, but carries that worry around instead of sharing it with the world. He’s a good kid, and I think he misses Ken more than he lets on,” Tania said.

Braedon seems like he is doing as well as could be hoped. It’s almost a case of out-of-sight-out-of-mind for Braedon at times, even though he still thinks about his Mum and brother a lot.

I recently watched Braedon play hockey on a frosty Saturday afternoon in Perth where he bustled his way up and down the left wing for most of the match. It was great to see him totally and utterly entranced by the challenge of the game, without a worry in the world. I even found myself cheering out loud when he broke through the defensive line, only to break into laughter when he had an air swing whilst attempting an outrageous shot from near the baseline.

Talking to Braedon after the match, I fall in love with his candidness, and he assures me he has his own way of remembering his Dad. “Every time I jump on my Dad’s motorbike, I can feel my old man. That bike means more than all the money in this world, it was his pride and joy,” he said.

“I used to give him shit about having a slow bike but he always said ‘it’s not how quick you get there, it’s all about the enjoying the ride and taking in the journey. I never really understood that, but I’ve since learnt that what he was saying is so true.

“I remember the day he got his new bike, the one I own now. He came down to my place the night before on his old bike, he woke me up early the next day because he was excited he was looking for a new one. He was like a kid in a candy store when we got to the bike shop,” Braedon said.

Ken proudly sits atop his new bike with wife Tania clearly thrilled

“I thought it looked like a space ship and like it was going to take off, and all he could say was ‘you’re a dick head’. I knew he wouldn’t want us to put it away and never ride it again, and I knew mum would never sell it. I would never admit it to him that I did really like the bike and up until he died,” Braedon said. A roaring reminder of Ken. 

Tania is slowly but surely getting back into the swing of life. She works a few days during the work as a cleaner, takes Sophie to school every now and then, which she says is the ‘highlight of my day’, and she hangs out with her 81-year-old Mum who she can have a bit of fun with.

“I had her out mulching the other day and I thought she was gunna lose a bloody hand in the thing. I’ve taught her to swear, so every now and then she tells me to fuck off which is always funny to hear,” she said.

I’ve told Jarrad and Tania that admitting that there is an issue is half the battle, and that they are much braver than they gives themselves credit for. That brought a big smile to Jarrads face, like a glimmer of hope had suddenly shone down on him. Jarrad messages me from time to time, usually a few days late, like most blokes our age, but I have developed a real liking for him, the skinny kid with a big heart. He also has a beautiful little puppy now, to go with two gorgeous daughters. Pieces of his life that are sure to provide many highlights long into the future.

But between these candid and enjoyable moments, the struggle for the Howes family will continue. I thank them again for allowing me the time and access to their deepest and darkest thoughts. 

And what was there motivation behind talking to me...well, they just want to help others who might be in the same situation. 

They, along with many others suffering from the same heartbreak, are the brave, courageous, vulnerable and inspiring. 

“Strength should not be measure by tears not shed, but by expressing the emotions of your heart”.

                                                       In loving memory of Ken

If you or someone you know needs help, or would like to reach out and talk to someone, try a friend or family member first. If that doesn’t work, please contact one of the following: Lifeline 131 114; MensLine 1300 789 978; Beyondblue 1300 224 636.