A Real Life Sugarplum Fairy
For most of us, Christmas is about feasting. From that first chocolate behind the door marked '1' on the Advent Calendar, to picking at leftover pigs in blankets and Ferrero Rocher on Boxing Day, nothing says festive like food.
But for the children around the country who live with Type 1 Diabetes, Christmas will be characterised not by Terry's Chocolate Oranges and Toblerones but by their usual rigmarole of daily injections and blood sugar tests, insulin-stabilising snacks and carb counting.
"If I look back to those early years, I don’t know how I coped," says Jubie Wigan, speaking from her Cotswolds home. Jubie's daughter Aliena was diagnosed with Type 1 diabetes at the age of two, eight years ago. "I probably haven’t slept through the night since that day – you’ve always got one ear open."
Jubie became aware that something was wrong with Aliena when her daughter's appetite and thirst seemed uncontrollable. A trip to the doctor confirmed the diagnosis of Type 1, and the following days were a crash course in how to inject Aliena, check her blood sugar levels and ensure her safety. But, says Jubie, "However much you manage it, there are always variables. Anxiety, temperature, hormones - they all play a part." Aliena had to have a blood test every two hours, twenty four hours a day, and an injection of insulin every time she ate or had high glucose levels. "I can’t remember life before. Aliena was diagnosed when she was two, and she’s now ten," says Jubie today.
But her story is a testament to the power of a mother's love, energy and hope. Jubie and her husband Charlie set about educating themselves as much as they could about Type 1, reading everything they could get their hands on and talking to experts. And then Jubie set herself an even bigger challenge: promoting awareness of the illness and fundraising for JDRF, the non-profit that funds research into Type 1.
Sugarplum Children is named after a beloved poem of Jubie's by Eugene Field:
"It has particular resonance for parents of children with Type 1, as we know that the only place our children can really eat all the sweets and chocolate they want is indeed in the garden of Shut-Eye Town," says Jubie.
Jubie launched Sugarplum in her own inimitable way: with a ball. "We were lucky enough that some public figures were able to come," she says modestly. Those public figures included Theresa May, then Home Secretary, who lives with Type 1 Diabetes, Pippa Middleton, Poppy Delevingne and Julian Fellowes. Since then, Jubie has hosted a ball once every two years. "Luckily, we had the ball last year," she laughs. 2019's ball, held at the V&A, raised £1.5 million for JDRF. Jubie and Aliena both gave impassioned speeches and received a standing ovation, Florence Welch performed and Mark Ronson DJ'd, and Jason Atherton and Tom Kerridge cooked. Auction prizes included a trip on the Venice Simplon-Orient-Express and the chance to have actor James Norton as your butler during a private dining experience with Michelin-starred chefs.
This year, Covid-19 has put paid to many of Jubie's fundraising initiatives, but she has found other ways to stay positive. "The first lockdown was a real lesson to all of us to slow down, calm down and focus," she says. "On a personal level, it was all about stopping dashing around. I did lots of calls with people who were newly diagnosed."
As Aliena approaches her teens, she is learning how to take on more of the responsibilities for her condition. "We try to encourage her to eat what she wants, but be realistic about it. I try to make her aware of the effect that different foods have on her. She wears a pump now, so we do a mixture of injections and pump. She's learning how to work out how many units and so on. So I have a freedom I haven't had before. You learn not to let it stop you."
Talking to Jubie, you get the impression nothing could stop her. Brimming with energy, infectious enthusiasm and deep knowledge of her subject, she is the perfect ambassador for this under-looked condition. "Any parent does what they need to do. Luckily, I have more energy than most people I know. It sounds naff, but I do believe we were chosen to go through this for a reason – to make it easier for others. I’m a real believer that it’s not the cards you’re dealt, it’s how you play your hand."