Sunday Herald Sun - Body and Soul

Mackenzie’s Mission Osher Günsberg “By day, I worked in a morgue; at night, I became a stripper” Beauty 12 Nutrition 13 Stars 14 Q&A Kate Ritchie 14 Public Relations

From partners’ annoying habits to other vexing issues of a personal nature, clinical psychologi­st Jo Lamble answers questions from readers looking for expert advice

- PHOTOGRAPH­Y DAMIAN BENNETT STYLING GEMMA KEIL STORY SASKIA TILLERS For more, go to mackenzies­mission.org.au.

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Advice

I’ve been with my boyfriend for five years. We get along great, but the one issue that really annoys me is that he is very stubborn and will not take advice – from me or anyone else. He will ask for advice about something as small as what shirt to wear, to things as big as family or work issues, but will then ignore the advice I give him! He’s so set in his ways; it makes my blood boil. Help me control my blood pressure. How do I get him to listen to me?

I couldn’t help smiling when I read your question because how many times have we all been asked for advice that is later ignored? Even when someone comes to see a psychologi­st, they often don’t take the advice they’re given. That’s because they may have come just to vent to someone outside their circle of friends and family.

If your boyfriend refuses to take any advice, I’d certainly stop giving it. When he asks for your opinion, maybe you could answer with a straight bat. In other words, ask him what his options are and which one appeals to him most. Or ask him to tell you more about the problem and simply act as a sounding board. Don’t underestim­ate the power of reflective listening (which simply means echoing what you’ve heard).

These conversati­ons will be good practice if you have a teenager in the house at any point. Adolescent­s often struggle to listen to their parents’ words of wisdom. Allowing your boyfriend to think aloud while you listen to him solving his own issues should make him feel heard and should relieve you of any responsibi­lity to come up with solutions. That way, your blood pressure will hopefully stay under control and maybe he will start to realise that his habit of asking for advice and ignoring the answe is frustratin­g. Becoming a good sounding board rather than a problem-solver should be far less stressful for you.

“My boyfriend asks for my advice about things like what to wear - and then completely ignores it”

At 35 weeks pregnant, Rachael Casella is the embodiment of a glowing mother-to-be. Yet beneath her radiant exterior, Rachael is grappling with a complicate­d cocktail of emotions. “I am so scared,” she tells Body+Soul. “But at the same time it’s exciting to feel him move and think,

‘Do we really get to keep him?’”

While a sense of trepidatio­n about what happens once you leave the hospital with a new baby is a source of anxiety for most new mothers, Rachael’s fear stems

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Body+Soul

Body+Soul

from an entirely different place. Having lost her daughter Mackenzie at just seven months and 11 days old from the genetic condition spinal muscular atrophy (SMA), Rachael, 37, and her husband Jonny, 41, are understand­ably terrified. And while this baby boy doesn’t have SMA, she confesses it’s “hard not to wonder if the rug is going to be pulled out again. We represent everyone’s worst nightmare.”

Jonny met Rachael at an Australian Federal Police safety training course in 2013. He recalls an indescriba­ble pull to her. “My gut said, ‘There’s your future. What are you gonna do about it?’” Marriage and a miscarriag­e followed before Mackenzie was born in 2017. Their daughter was a picture of health and happiness, but their joy was short-lived. When, at 10 weeks old, Mackenzie was diagnosed with SMA – a terminal genetic condition that progressiv­ely destroys nerve cells in the brain stem and spinal cord that control muscle activity such as walking, breathing and swallowing – Rachael felt utterly “blindsided”.

“We were told there was nothing we could do except take her home and love her,” Rachael recalls. “She had a beautiful life with us once we were able to get out of bed. I don’t think we processed what was happening, but we could clearly see that we had this little girl who needed us, and we needed to just let her live.”

For seven months, Rachael and Jonny soaked up every minute as a family, until one morning, Mackenzie turned blue. “I screamed for my mum and Jonny, and called the ambulance while we tried to get her breathing,” she says. “I still get flashbacks when I hear sirens.” After five days in hospital, Mackenzie passed away on October 22, 2017.

Rachael and Jonny were consumed by grief. “We couldn’t comprehend how we were supposed to keep going, how the world kept turning.” But gradually, it morphed into something else – anger. Unbeknown to Jonny and Rachael, they were both carriers of SMA, meaning that while the condition didn’t affect them, there was a one-in-four chance their children could get it. They discovered that while SMA, as well as hundreds of other life-threatenin­g genetic conditions, can be tested easily with a saliva swab, they’d never been offered it because they didn’t have any family history – even though four out of five children born with a genetic condition don’t either. Then there’s the cost of the test – which can be up to $1000 – an additional expense many prospectiv­e parents can’t afford.

“Anger can be a powerful driver,”

Rachael says. “And we were really angry, because we’d asked for every test possible to have a healthy child.

For a long time, I wondered, ‘Why us?’ But that changed to ‘Why not us?’” It is estimated all people are carriers of about five faulty recessive genes, some of which are severe or lethal and can be passed on to their children. In addition, one in 20 children are born with a genetic condition or birth defect (which range from those you can live with, to those that are terminal), which is by no means a small number. “So why aren’t we testing?” Rachael asks. “Why aren’t we as a society talking about this?”

A woman on a mission, Rachael wrote 275 letters to federal parliament – determined for her daughter’s death not to be in vain. Her success was swift. Less than four months after Mackenzie’s death, Rachael and Jonny met with Federal health minister Greg Hunt.

Not long after, when handing down the Budget in May 2018, the government announced a $500 million genomics project to be rolled out over 10 years.

The first project to be commission­ed was Mackenzie’s Mission, a $20 million genetic carrier screening study. “There were a lot of tears,” Rachael says. “It felt like a huge win.”

“Rachael has been on the hardest journey, yet has remained an incredible force for good,” Hunt tells Body+Soul. “Mackenzie’s Mission will bring real hope and treatment to Australian parents and a better quality of life for children yet to be born.” The study will also assess how Australian­s respond to the idea of testing, consider ethical implicatio­ns, and determine technical/financial capacity for the test to one day be made free for every couple who choose to have it.

Professor Martin Delatycki, a lead investigat­or for Mackenzie’s Mission, explains, “Education is critical. We’re doing our best to demystify genetics; to make people understand that we’re all carriers. The key word is choice – not everyone will want the test. It’s about giving people informatio­n and the option, so they can make decisions that aren’t only based on affordabil­ity.”

Jonny says watching Mackenzie’s Mission come to life is surreal. “When Rachael first wrote those letters, I thought no-one would listen to us, because people lose their kids every day. To see it come to fruition is incredible.”

Rachael and Jonny always knew they wanted to have Mackenzie’s siblings, but with their new-found knowledge, things were more complicate­d. Rachael endured nine gruelling rounds of IVF, surgery for endometrio­sis – likely caused by the IVF – and had two successful pregnancie­s, only to find out that one baby had SMA and the other had a severe chromosome condition. Each time, they would have to “terminate for medical reasons”, a choice Rachel describes as “pure torture. Saying goodbye to a baby you want so much. But watching Mackenzie struggle to breathe, we knew that was not a life we were going to put these babies through.”

Now, as Rachael and Jonny look to the future, they are allowing themselves to dream about what life may be like once their son is born next month. “I imagine him at school, drawing a picture of his family, and the teacher asking, ‘Who’s that?’” Rachael smiles. “And him saying, ‘That’s Mackenzie.’ We want him to know he’s got a big sister and she’s in the stars looking out for him. I still feel incredibly lucky. I’ve got a beautiful husband, family and daughter – even though she’s not here. No matter how much pain came from all of this, she is, and always will be, the biggest gift.”

“I was living alone before that.

No-one had to know that I watched TV with subtitles, or how loud I had it on,” he tells Body+Soul. “But when I moved in with these two, I would start to get words wrong. Audrey would say something, and I would go, ‘What are you talking about, we don’t even have a cat?’ And she would then get the feeling I wasn’t listening to her. Or Georgia would say something and I would respond in a weird way. It started to really affect the human connection with these two people I love so much.

And that’s when I knew I had to do something about this.”

Günsberg is now an ambassador for Connect Hearing, a national network of healthcare hearing centres that takes a tailored approach to helping those with hearing issues. “They were able to understand my [hearing aid] needs,” he says of the audiologis­ts who treated him. “There are as many different hearing aids as there are kinds of spectacles. There are ones you can leave in your ears for weeks and weeks, but that doesn’t work for me because I have incredibly short ear canals – tiny and little – and so they wouldn’t fit.”

Due to his work as host on such shows as The Bachelor Australia and The Masked Singer Australia, Günsberg needed hearing aids that sit outside the ear to allow room for his presenter’s earpiece inside it.

While he may have taken a while to get the hearing aids, he isn’t self-conscious about them. “Look, I wear bright red glasses – I do every Zoom call with these frames that make me look like I’m your mum working at the library,” he says with a laugh. “My hearing aids are bright white, so if you stand behind me, you know what they are. I have no problem with that.”

And why would he, given the enormous difference they have made to his life? “Ultimately, I wasn’t fixing the fact that I couldn’t hear well. It’s not so much a hearing problem – it’s a connection problem,” he explains. “I was trying to fix the fact that I wasn’t able to connect emotionall­y, and healthily, with my family. I’m so grateful I’ve been able to do that.” For more informatio­n on Connect Hearing, visit connecthea­ring.com.au.

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 ?? Sportscraf­t shirt and pants, sportscraf­t.com.au Cos T-shirt, cosstores.com ?? RACHAEL WEARS Arnsdorf dress, arnsdorf.com.au
JONNY WEARS
Sportscraf­t shirt and pants, sportscraf­t.com.au Cos T-shirt, cosstores.com RACHAEL WEARS Arnsdorf dress, arnsdorf.com.au JONNY WEARS
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 ??  ?? OSHER WEARS
(this page) Uniqlo jacket, uniqlo.com/au; Bassike top, bassike.com; Hugo Boss pants (with belt), hugoboss. com/au; his own ring; (opposite) Jac+Jack shirt, jacandjack.com
OSHER WEARS (this page) Uniqlo jacket, uniqlo.com/au; Bassike top, bassike.com; Hugo Boss pants (with belt), hugoboss. com/au; his own ring; (opposite) Jac+Jack shirt, jacandjack.com
 ??  ?? TIME TO LISTEN Osher Günsberg hosting season two of The Masked Singer Australia last year; his wife Audrey, stepdaught­er Georgia and son Wolfgang in November 2019.
TIME TO LISTEN Osher Günsberg hosting season two of The Masked Singer Australia last year; his wife Audrey, stepdaught­er Georgia and son Wolfgang in November 2019.

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