Names: Rachael and Jonny Casella Years together: Seven Occupations: Police detectives Whenever Rachael and Jonny Casella are having a rough day, they look at each other and say “together”. They’ve been through more rough days than most. In 2017, their baby daughter Mackenzie was diagnosed with spinal muscular atrophy type 1 (SMA), a severe inherited genetic disorder that causes the muscles to waste away. She passed away when she was seven months old. Since then, the couple have suffered a series of heartbreaking miscarriages. Yet in their darkest days, they vowed they would stay together and they regularly remind each other of that commitment. Says Rachael: “Mackenzie was a gift and she didn’t deserve for her parents to break up over it.” Both work for the Australian federal police and they met in 2013 on a safety training course in Canberra. Jonny was the instructor and Rachael one of his recruits. “At the end of the first lesson, she came up and asked a series of questions,” remembers Jonny, with a smile, “and I [thought], ‘This one’s going to be a pest.’” At the time he was in a long-term relationship but after he broke it off, he asked Rachael out. He knew it was serious. “I realised pretty fast that things were definitely the way they should be.” It took Rachael longer. As he’d just come out of a serious relationship, she didn’t want to be a rebound. She quizzed him about his intentions, throwing in some tough questions: “I said, ‘I want to have kids, so if you don’t want to have kids, don’t be here’. [Also] ‘I want to work, so if you’re looking for that old nuclear family, where the woman stays at home and looks after the kids, you’re probably barking up the wrong tree.’” They realised they share many of the same values and beliefs – something that has stood them in good stead. “We’re very lucky with Mackenzie’s diagnosis, and with a lot of decisions we’ve had to make since then, there hasn’t been a single disagreement or philosophical difference,” says Jonny. Things moved quickly after they got together. Initially a long-distance relationship, Jonny soon moved from Canberra to join Rachael in Sydney. Within six months, they were engaged They married six months after that, in February 2016. They were both excited to start a family and, despite an early miscarriage, Rachael fell pregnant soon after that. Mackenzie was born on 11 March 2017. They loved being parents in those first idyllic months. But when Mackenzie was 10 weeks old, she was diagnosed with SMA, and their world shattered. They were devastated when they found out there was no cure. “There was nothing that we could do,” says Rachael. “You try to look for little cracks of light, something that you can hold on to. Some kind of hope but you’re being told no, this is happening. There is no way that you can get off of this track.” Jonny adds: “And while everything’s falling apart, we have this beautiful little baby … that is reliant on us. And she doesn’t know that she’s sick, and she’s the happiest, most joyous little baby that you’ve ever seen. So we made the decision never to cry in front of her, which, I think for the most part, we managed to succeed with. And we vowed to give her, no matter how long we had her for, the best possible experience that she could have.” They decided to travel around Australia as a family. “It was like we were in this beautiful little bubble of just us. We would be able to pretend sometimes that it wasn’t happening,” says Rachael. “I think those trips were incredibly important not just for Mackenzie and for our memories of her, but for our relationship as well. Because there was a lot of really hard things happening back home. It felt like we were fighting [the world], fighting to get time off of work, fighting to make sure she got the right care. Everything was exhausting.” They had to be completely honest with each other when it came to Mackenzie’s care. “We had an agreement that we were a safe space, and that we could both say whatever we needed to say without the other one getting mad,” says Rachael. “Which is hard, because you’re having really intense conversations, and if you’ve got someone who says, ‘I don’t want my child to live like that’, and the other one had a different opinion you are potentially stepping on a landmine in your relationship.” Fortunately they came to the same conclusions. Rachael and Jonny were with Mackenzie when she died on the morning of 22 October 2017 at the Sydney Children’s Hospital. Leaving the hospital without her later that day was, says Rachael, “soul-shattering”. After her funeral, the couple flew to New York to escape. Each day they walked and walked across the busy city. “We would catch ourselves when something had made us smile, and we would feel guilty,” says Rachael. “And then we would have a moment where we would be doing something, and we weren’t talking about Kenzie, and one of us would burst into tears. And we let ourselves do it together.” They allowed each other to grieve in their own way. Rachael took medication, something she’s not embarrassed about. “I had lost my daughter and I needed help ... it allowed me to be able to manage.” Writing about their experience on her blog and also in a new book helped her to process her grief. It’s something Jonny supported: “Every time she would post something new, I could really see that it was helping her.” And whenever she was angry at the world, Jonny tried to be patient. “Just be there for her, and do whatever she needed, so that she could survive this whole experience,” he says. On her part, Rachael listened as much as possible. “Whenever Jonny went to speak, I always stopped to listen. Because it wasn’t a common occurrence,” she says. “And I try really hard that if he ever asks for something, I will always give it to him, because he doesn’t ask that much.” She lets it go when he jokes around: “When we’re really sad, he would try to alleviate some of the intensity, and rather than getting mad at him for trying to change the mood, I would love him for it.” Not long after Mackenzie was diagnosed, they discovered they both carry the SMA genetic mutation. It means the chances of their future children having the disease are higher. They were aghast to discover there’s a blood test they could have done, that identifies those who carry the gene for SMA and other genetic disorders. The test is easy and affordable, but because there’s a lack of awareness, very few potential parents do it. Rachael was determined to change this. In 2017, she wrote to all federal MPs to push for testing to be routinely offered and funded. “I needed to do it. I felt like there was something that was completely unfair about what was happening. Part of me wanted acknowledgement that [Mackenzie] was here and that she was beautiful, and that what was happening was completely not OK,” she says. At first Jonny wasn’t sure. “My initial response was, ‘Why? They’re not going to listen. We’re just another family who lost a child,’” he says. “I’m very happy to be proven wrong by my wife regularly, and this is probably the best instance of that ... I’m so glad I picked Rachael, who, as I said, is a massive pest. And she started hassling the commonwealth government.” It worked. In May 2018, the federal government announced $500m towards genomic research, including a $20m pilot study for reproductive genetic carrier screening. That pilot study – named Mackenzie’s Mission – has been completed and earlier this month, the recruitment of 10,000 volunteer Australian couples to be tested began. Rachael and Jonny have continued to try to conceive, both naturally and through IVF. There have been heartbreaks along the way but they are determined to keep going. “We both love being parents. I love being a dad so much,” says Jonny. “And I had so much fun every day with that little girl, it was crazy. It’s hard to say goodbye to that level of love and that level of enjoyment.” Their bond has remained tight. “I don’t think you can go through experiences like we’ve been through and the journey that we’ve been through and not become stronger,” says Jonny. “Families break up all the time after the loss of a child or a difficult situation. For us, I think because we were able to provide such a united front, and we haven’t argued on any major point, it’s brought us closer.” They’ve never questioned their commitment to each other. “Even before all of the horrible stuff happened, even when we first got together, I really loved the feeling of stability. I knew right from the start that this was my forever,” says Rachael. Communication, honesty and those early conversations about their shared values helped. Johnny adds: “Luckily, we both see right and wrong in the same light. And when you’ve got that strong foundation, I think everything builds on that quite strongly.” “And we are kind to each other,” says Rachael, nodding to small gestures such as a cup of tea or a shared meal that make a difference. “It’s those kind acts that you do for one another, being gentle with each other’s feelings, and wanting to make each other smile.” • Mackenzie’s Mission by Rachael Casella (Allen and Unwin, RRP $29.99) is out now • We want to hear your stories about staying together. Tell us about you, your partner and your relationship by filling in the form here