Sue and Angelo had decided they wanted four children, and the plan was to have them before Sue was thirty. But what followed after Danielle’s birth were multiple unsuccessful pregnancies. Sue is pragmatic, almost clinical, in summarising the couple’s attempts to fall pregnant: ‘I had a few miscarriages, each of them at around four months. I also had two ectopic pregnancies after that. For some reason, I couldn’t seem to have children after Danielle’.
Sue recalls the first ectopic pregnancy: ‘I was having a lot of pain and I was bleeding, so I rang the doctor. Then I drove myself to the hospital because I needed to get there in a hurry. But I had to put the rubbish bin out first. It was rubbish collection the next day. I do things like that. Silly!’
Sue’s subsequent hospital stay was an unpleasant experience. Following the operation, she was put in a room with young mothers and their newborn babies. ‘That was tactless’, she says, the wry comment downplaying what must have been crushing at the time. ‘I came out of the operation and there I was surrounded by all these little babies and new mums. The doctor said, “It’s all right, you’re young, you have plenty of time”. Famous last words!’
The Albertis tried IVF, a very new option at the time, and even considered adoption in their quest for a large family. When Sue had a second ectopic pregnancy in her early thirties, she decided that was enough: ‘I said to Angelo, “This is it, no more. We have to accept what will be will be”’.
Danielle had always wanted to go to Disneyland, but devoted as they were to their beautiful daughter and despite significant assets, Sue and Angelo had never taken a holiday. Ever practical, the couple’s wealth was locked into investments—they had never lost the sense of frugality that characterised their respective childhoods. Neither was time squandered on pleasures; it was put into the business. Sue says, ‘We were always working, so we’d never been away’.
But when Danielle was twelve and a half, Sue finally decided a holiday was well overdue and she organised a trip to Disneyland. Up until then there had been no indication of ill health, but on the plane coming home Danielle developed an insatiable thirst. Sue remembers it clearly: ‘She had this incredible thirst and couldn’t stop going to the toilet. I thought, “She can’t be that dehydrated. What on earth is going on?”’
On arriving back in Australia, Danielle said to Sue, ‘Mum, I think there’s something wrong with me’. Her mother took her to a doctor that afternoon and Danielle was immediately diagnosed with type 1 diabetes. ‘In those days’, says Sue, ‘you were kept in hospital for about ten days to learn all about the disease, the diet, the insulin injections. The thing I found hardest of all was when she said to me, “Mum, if I take this, will I get better?” It was so difficult for me to say to my daughter, “It’ll never get better. It’s for life”’. Sue says Angelo, who adored Danielle, was similarly devastated by the diagnosis. But as would prove to be the case with their daughter, Sue says he had difficulty accepting the reality of the disease, and as a result, the practical management of Danielle’s health would land on her shoulders.
Sue remembers being surprised to discover that type 1 diabetes—also known as juvenile diabetes, as it typically strikes before the age of thirty—represented one of the major unknowns of medical science. This is still the case to a large extent. Unlike type 2 diabetes, which is a progressive, lifestyle-related condition where the body gradually becomes resistant to insulin, or is unable to produce enough of it, type 1 diabetes is characterised by a sudden and dramatic onset. It is not linked to lifestyle factors.
More than 120 000 Australians, approximately 1.25 million Americans and more than 10 million Chinese have type 1 diabetes, whose sufferers account for roughly 10 per cent of the world’s total diabetes population. It is the most common chronic, or long-term, childhood illness in Australia. Yet despite these numbers, the causes and triggers of the disease are still poorly understood. Two things that are known are that type 1 diabetes currently is not preventable, and there is no cure.
Professor Len Harrison, a leading international diabetes expert and research scientist, recalls his first conversation with Sue Alberti in 1981: ‘I’d come back from four years in the United States where I’d been doing diabetes research. Sue called and made an appointment off her own bat to see me. I remember meeting her in my office in the hospital. Sue came in and said, “My daughter has type 1 diabetes and I’m looking for a cure”. I guess that’s the way it happens in her business. You have a problem on the job and you fix it—you have a vacant block of land and you build a shopping centre on it’.
Len responded, without irony, that he wanted to cure type 1 diabetes too. That was the beginning of a 36-year friendship characterised by hope, mutual support and tenacity.
When Sue set out to find a cure for diabetes, Len Harrison was one of only a small number of research scientists investigating the disease. What Sue discovered upon Danielle’s diagnosis was scant knowledge of the disease, little interest in funding medical research, and virtually no support network for type 1 diabetics. She started to ask questions, firstly about the nature of the disease itself.
A healthy immune system works to protect the body against infection. Immune disorders, also known as chronic inflammatory diseases, are caused by an inappropriate response that attacks the body’s own tissues. Type 1 diabetes is described as an autoimmune disease, where the pancreatic beta-cells, which produce insulin, are destroyed by a person’s own immune system. Sufferers need to inject themselves with insulin several times a day to compensate for the death of their beta-cells.
Everyone with type 1 diabetes is dependent on insulin. It is the hormone that allows the body to convert food into energy, into usable sugar/glucose, and so manages the body’s blood sugar levels. Without insulin, these levels can go too low or too high. Hypoglycaemia occurs when the level dips to a dangerous low—an acute ‘hypo’ can lead to a coma, from which a diabetic may not awaken. Hyperglycaemia is when the blood sugar level peaks too high, in extreme cases causing a serious condition called ketoacidosis.
‘Brittle diabetics’ are those who experience frequent and unpredictable swings in blood sugar levels. These are the people who could fall unconscious and therefore may be unable to drive, cook over a stove or take care of children for risk of passing out. The incidence of diabetic coma is often all that people know about type 1 diabetes. More common, but just as damaging, are consistently elevated blood sugar levels. These can lead to what is arguably the most devastating long-term consequence of diabetes—vascular complications.
Diabetes complications are the research focus of internationally renowned scientist Dr Mark Cooper, formerly of the Baker Heart and Diabetes Institute and now with Monash University, both in Melbourne. He explains that these can include ‘eye disease, kidney disease and neural damage, and the major macrovascular complications include accelerated cardiovascular disease, resulting in heart attacks, and cerebrovascular disease, manifesting as strokes’. Sue became a major supporter of Mark and his research for the unfortunate reason that Danielle’s experience of diabetes over the years was dominated by such complications.
Mark considers Danielle’s case as unfortunately typical of the bad outlook for diabetics: ‘We don’t know why some people get the complications and others don’t. We know it’s due to glucose, which is increased in diabetes, but it remains a mystery of diabetes. Our research is about how glucose leads to complications, what are the immediate pathways, and Sue supports that work’.
According to Sue, her daughter changed from the day of her diagnosis: ‘Danielle was a delight up to the age of twelve. After that her life changed forever. As did ours. People don’t understand how tough it is for these kids, and there are lots of kids with this same problem. It’s such a complex disease to find a cure for’.
There is still a concerning lack of education about what being diabetic means. The treatment options are not widely known. For people with no background in medical care, administering insulin injections is daunting. For most people, detailed knowledge of carbohydrate counting, or even an understanding of basic nutrition and how our bodies process food, is limited. The hallmark of a type 1 diagnosis is a family that feels overwhelmed, ignorant and frightened.
Parents of diabetics talk about the steep learning curve in understanding that one wrong move can mean the death of their child—the very real possibility that the child may go to bed and not wake up. They write about the trauma of needle-pricking the sensitive fingertips of their young children every time they want to eat. They share the horrors of poor experiences in the health system and their child’s loneliness from being the only diabetic at their school. There are the behavioural complications and social pressures that run in parallel. According to a diabetic who was diagnosed in his early teens, ‘Teenage girls sometimes try and manage their weight by running their blood sugars high and not taking insulin. But when you don’t take the insulin you feel terrible. It’s like a hangover. It feels like you’re in a fog, where your brain isn’t switched on and you don’t function properly’.
Not only does the young diabetic and their family need to learn how to manage glucose levels, which means thousands of needle-pricks a year and constant oversight by worried adults, there is the challenge of educating friends and other carers about the disease’s risks and how to respond to them. Parents need to share with others the signs of low body sugars, which can include falling down, acting weepy, not listening and getting angry. These and the many other symptoms, including hunger, confusion, stubbornness, tremors, headaches and clumsiness, can be difficult for babysitters, teachers or friend’s parents to identify. For young teenagers, sleepovers become fraught with parental fear and require meticulous planning, such as a bag packed with food, syringes, monitors and emergency response plans.
Danielle, at twelve years of age, suddenly faced huge challenges. An only child with two strong-willed and successful parents, she had already made up her mind that she was going to make her own way in the world. But to become significantly different from the norm at such a young age was extremely tough. The fact that type 1 diabetes was so poorly understood meant Danielle was subjected to a lot of misguided perceptions and bad assumptions. The self-consciousness so typical of adolescence was also a factor, and her mother notes the difficulty in managing the physical aspects of diabetes in a girl who was an exceptionally private person. Embarking on her first year of secondary school, Danielle had to deal with the sharp barbs of young children whose edges had not yet been softened through teenage experience. ‘She never injected in public’, says Sue. ‘But the girls used to tease her and there were some mean comments that arose through ignorance about the disease.’
However, for Danielle, possibly the most distressing aspect of diabetes was the fact it was not caused by anything that she could have controlled, nor could she beat the diagnosis—the disease owned her on an hour-by-hour basis. Danielle struggled with the disease that dominated her life.
Danielle’s doctors, her mother, in fact everyone around her knew she wasn’t coming to terms with her illness. It was a tumultuous time. ‘She was definitely in denial about her diabetes’, says Sue. ‘I would never say that to her then, but I can say it now. She simply didn’t accept the disease. She knew that if she worked at anything she could succeed, but she couldn’t win this so she didn’t accept it. I was trying so hard not to be a policeman … I was trying to be a mum, to care for her. But Danielle was fighting me, fighting the disease. She was resistant, unaccepting’. Sue still believes that one of the reasons her daughter never accepted the diabetes was because she thought she could outsmart it.
The need to absorb insults is part of parenting teenagers, but still, Sue admits, taking the brunt of this could be hard: ‘Danielle would lash out. She knew how to hurt me and she would definitely go below the belt at times. Perhaps she blamed me for the diabetes. I don’t know if she did but I certainly blamed myself, even though there was no history of the disease in the family. I was told by doctors to stop beating myself up’.
In addition, Danielle had always wanted answers, and she most definitely wanted them about her disease. ‘She was more than just curious, she’d interrogate people!’ says Sue, adding: ‘She would constantly question the doctors’. But Sue says her daughter didn’t get what she wanted: ‘It was the 1980s and the answers were patronising. They’d say, “There, there dear, do as I say and you’ll be fine”’.
Len Harrison was different. He was a comforting and knowledgeable presence. The young teenager adored Len from the outset, noticing his eccentricity on their first meeting: ‘Mum, he has different-coloured socks on. He really is a nutty professor’.
Looking back, Len is resigned but rueful: ‘I don’t feel I got close to the ideal of getting Danielle to understand and do what was required to manage her diabetes. You can give people with diabetes advice in different ways, but it’s up to them to accept it or not … I tried really hard not to preach, to explain things to make her life as simple and easy as possible, but her results showed that her blood glucose was always high. Danielle was a smart kid. She would sit in front of me, listen, smile and nod. But it was difficult to get her to communicate about her diabetes’.
While the professor was possibly too close to her mother for Danielle to have an independent relationship with him and truly open up, she nonetheless valued his honesty, patience, and commitment to finding a solution. Sue remembers that at the age of nineteen, Danielle said, ‘Len can’t wear matching socks Mum, but of all the people in the world he is what I call a true humanitarian’.
Danielle was clearly angry that she had type 1 diabetes, and at her lowest points her reactions were difficult to manage. Sue is frank about this: ‘I would call Len when Danielle was out of control, when she was refusing to have insulin and acting out her frustration. I’d be panicking and I’d ring him up, at six in the morning, and say, “I just don’t know what to do”. I mean this is well above and beyond what a doctor needs to do, but Len would talk me through things. I can be gung-ho and like the Duracell bunny and Len is so calming’.
Sue’s brow furrows, as if it still doesn’t make sense to her: ‘She was really sick and never complained. Danielle would often say, “There are people who are far sicker than me”. She wouldn’t talk about it. It was very hard to get her to discuss it and she found it very difficult to cope with’.
Danielle completed her secondary schooling at Sacre Coeur, a Catholic girls’ school in Melbourne’s inner-eastern suburbs, where Sue remembers her daughter being regarded as ‘the girl from Mulgrave’. Sue also recalls: ‘The girls at school could be quite nasty about her illness, saying “I don’t want to sit next to you, I’ll catch diabetes”. They would say that she had diabetes because she ate too many chocolates, which she didn’t by the way. She’d say to me, “Mum, you’ve got to get the message out there. I’m sick of people thinking I eat too many lollies”’.
When Danielle was about sixteen, she called her mother into her bedroom one morning and said, ‘Mum, look at this, my hair’s falling out’. She showed Sue a brush and then took her into the bathroom—the tiles were littered with dark strands of the young girl’s hair. ‘I don’t know whether it was the diabetes that caused the hair loss’, says Sue. ‘I’m not a doctor. But I think stress aggravated the problem. She was terribly worried about losing her hair.’ And Danielle didn’t want anyone to know what she was going through. She’d say to Sue, ‘You tell anyone and I’ll run away, I’ll leave home!’
Danielle’s rebellious nature was unsurprising in the context of a family with headstrong genes—her mother has been described as a renegade and her father was a trailblazer who didn’t follow the rules in life. Another story from Danielle’s teenage years is about the time she asked Melissa Chavulak—then Sue’s hairdresser, now her household manager and a long-time friend—to dye her hair blonde. ‘But she went from dark red to this bright orange’, remembers Melissa, ‘and I was horrified’. But then Danielle looked up and saw the colour. ‘I’ll never forget the look on her face’, says Melissa. ‘She was ecstatic. “I LOVE it!” she said. But I wasn’t sure whether she really loved the colour or whether she was grinning because she knew it would upset her mother!’
The combination of Danielle’s naturally private, contemplative personality, rebellious spirit and denial of being diabetic was a recipe for disaster. ‘I remember once we were coming back from Europe and we were in Hong Kong’, says Sue. ‘We were standing in the airport lounge and Danielle slid down the wall. I asked her what was wrong and when I got close I could smell ketones on her breath, which is what happens when the blood sugars are too high. She said, “I haven’t taken insulin for three days. I’m sick of it Mum, I’ve had enough”. Three days without insulin and you can die, especially if you’re type 1. Danielle refused to get treatment in Hong Kong but when we got back to Melbourne I took her straight to hospital. She was still only seventeen so we went to the Royal Children’s Hospital and she was on a drip for two weeks’.
Sue finds humour in the memory, rolling her eyes in mock horror as she recounts collecting Danielle from the hospital: ‘I got there and no-one knew where she was. The nurses hadn’t seen her but her bag was all packed and ready. Then I found her downstairs in emergency, getting ideas for paintings. She was talking to everyone down in casualty, among all the blood and guts’.
Sue speaks candidly about their relationship: ‘Danielle was a very kind and beautiful person, but very complex. She kept her emotions to herself. She was a deep, deep thinker and very different from me. She’d say, “Who needs me when you’re there? You light up the room”. Maybe I could light up a room, but Danielle would sit back, sum it up, work it all out. But if you wanted an opinion, you’d have to ask her’.
In 1987, as Danielle approached twenty, the family upsized to a home in Sarah Crescent, Templestowe, an address in Melbourne’s north-east that was renowned for premium properties. Manicured lawns and sweeping driveways led to mostly double-storey homes, many with a distinctly European flavour such as thick balustrades and amber window glass. Double-sized house blocks contained tennis courts and swimming pools that sat at the feet of stately homes with city views. The Alberti home, positioned gracefully on an acre block, had been advertised as a ‘gentleman’s mansion’. ‘It was certainly a step up from where we were,’ acknowledges Sue, ‘but everything we did was an investment. We never really bought anything just for fun’.
It was from here that Danielle ventured off to orientation week at Melbourne University, where she joined the rowing club and, despite her diabetes, the chocolate club. Sue shrugs: ‘That was typical of Danielle. She couldn’t eat the chocolate but she joined anyway. And she did rowing for a while but kept having hypos, so she had to stop’.
Danielle continued to express herself through her art. Angelo called his artistic daughter Picasa—the feminine Picasso. ‘He also liked to tease her. He would call her Alitalia and her German friend Lufthansa’, says Sue. A traditional Italian father, Angelo liked to be in control. According to Sue, father and daughter didn’t fight, but they were always on for a debate: ‘I always used to go and do the ironing whenever they got into a debate. When those two got started, there was no win-win. Neither one would give in and I couldn’t stand it. They debated everything—politics, business. Put it this way, I never had any ironing that needed to be done. I was always up to date!’
Sue says that when Danielle turned twenty-one, mother and daughter both grew up. Danielle moved out, to fashionable South Yarra, and she and Sue became a lot closer. ‘Her father didn’t want it to happen’, recalls Sue. ‘Like any good Italian father, he wanted her at home. But I encouraged her. She needed that independence. One weekend while Angelo was away, I helped her move out. It wasn’t easy when he came back. I was the world’s worst mother! But that all settled down. Danielle started to thrive.’
Then Sue says, ‘But maybe it was too late, perhaps the damage had already been done. With the denial and not looking after her body …’ Her voice momentarily trails away. ‘Danielle knew that if she wanted something in life, she could put her mind to it and succeed. But this was a battle she couldn’t win. She was always asking doctors, “What if? What if?”’. No-one was able to give Danielle the answers she sought.