Jubie Wigan is the founder of Sugarplum Children, a fundraising initiative for Type 1 Diabetes. She set up the support network following the diagnosis of her daughter, Aliena, in 2012.
Six and a half years ago, at the age of just two, type 1 diabetes took hold of our daughter Aliena’s life, and of our lives as we knew them. It hasn’t let go since. Not one day has passed when we haven’t had to monitor her blood glucose levels regularly.
Type 1 occurs because your body is unable to produce insulin. It affects adults and children suddenly and without warning, leaving them dependent on a daily regime of insulin injections or pump infusions and blood tests, just to stay alive. Nothing a child with type 1, or their parents, could have done would have prevented it developing, they are just unlucky - and it will stay with them for life.
Every single thing Aliena eats must be measured and managed in order to avoid hypo- or hyperglycaemia. The seriousness of a hypo – when blood sugar decreases to below normal levels - cannot be underestimated. Having seen her unconscious three times, the worry of her having a hypo without us knowing is constant, and glucose tablets are as life-saving to her as an inhaler is to an asthmatic.
However, high levels can often be more problematic to remedy and have more damaging consequences in the long run. Badly controlled diabetes (especially in someone who is diagnosed so young) can lead to blindness, major nerve damage, osteoporosis, and Diabetic Ketoacidosis. When the scanner flashes up with a 12 or above, my heart just sinks, as what will follow is regular testing for several hours. Was it a miscalculation of carbs? Does the insulin cartridge have an air bubble? Has the cannula in her leg blocked? The latter two will need to be eliminated, so a new cartridge is primed and cannula inserted, more often than not in the darkness of the night.
The sheer enormity of the responsibility can be overwhelming, and it’s a weight we’ve been living with since Aliena’s symptoms suddenly appeared. What used to be one Weetabix for breakfast became two, then four, and before I knew it six, which you or I would struggle to eat, let alone a two-year-old. Her tantrums – which she would apologize for afterwards – were beyond her control, and they were totally out of character for such a docile girl (many people don’t realise the behavioural symptoms associated with T1D). As her kidneys were working overtime to try to filter and absorb the excess sugar from her bloodstream, her thirst became unquenchable. It was the moment she had downed an entire bottle of water in a petrol station before I’d even had time to get to the till that I realised we had to see a doctor. He studied her urine sample and thought it was a joke: it contained more sugar than elderflower cordial. He told us that had we waited any longer, she might not have survived.
We go to a clinic every three months but day-to-day we have to decide ourselves how much insulin we administer. Every year, Aliena has over 3,500 needles go into her body, including a finger-prick blood test every two hours. My husband Charlie and I became doctors overnight, and are on call 24/7, 365 days a year regardless of where we are or what we are doing. That can take its toll – on being a parent, on a marriage, on friendships, on colleagues. The pressure is immense; her life is literally in our hands. I’m proud to say, though, that we’ve had only one A&E visit, and I honestly think it’s because I was sobbing so hard on the phone that the hospital thought I should come in for a night ‘off duty’.
Each year brings a new set of challenges. As she gets older it’s much harder to control what she eats. Allowing her to lead a normal life and go for lunch or tea with friends is often more stressful than not, for both sets of parents involved. But our friends have been amazing at taking on the responsibility, and we are slowly allowing ourselves to let go of total control. She has also had to brave the dentist’s chair, having already needed several fillings - a result of countless packets of glucose being forced down her in the middle of the night when brushing teeth afterwards just isn’t an option. Explaining to a child that they need a filling when they aren’t allowed to eat sweets seems so unfair.
You try not to let it define you or your child - or worse, your entire family - but it’s hard. But we’ve learned to overcome the obstacles and celebrate Aliena’s ‘diaversary’ every July. It has helped her to become the superstar that she is, and the family that we have become.
Sugarplum Children is a support network and fundraising initiative that I set up under the umbrella of the Juvenile Diabetes Research Foundation (JDRF), a type 1 diabetes charity and a funder of world-class medical research. Since 2014, Sugarplum Children has raised £1.6 million for the Artificial Pancreas – a system that will automate a good deal of blood-sugar management, dramatically reducing T1D-related risks and improving the lives of people who have the disease.
Sugarplum has become an outlet for us to turn the ‘terrible’ into the ‘wonderful’ – and for Aliena to know that she is the driving force behind something that will ultimately help to change lives. I want to be able to say to her, as she gets older: 'We did this, we made a difference'. That’s the wish of any parent of a child who is ill. To know we have done all we can.
Jubie will be planning a Sugarplum Children’s Party in 2019 to raise money for JDRF. Please visit her website for more information: sugarplumchildren.com.
An Ode to Type 1 by Jubie Wigan
An angry and cruel beast you crept into our lives
Slowly manifesting yourself as a hideous surprise
An evil curse we just can’t shake
Leaving a trail of devastation in your wake
We laugh, we cry, we constantly ask ourselves the question why?
A rollercoaster of highs and lows over the years
With more days than not ending in tears.
Sweets, chocolate and biscuits are banned,
The doing of your very own hand
The same packed lunch every day at school
Whilst everyone tucks into pudding around her,
How can you be so cruel?
Even with constant monitoring perfect results can’t be guaranteed
Counting every single carb as you seem to watch on with glee
So many other factors can turn things awry
However diligent we are and however hard we try.
Night after night you make me want to scream
Waking our precious child from her sweet deep dreams
I walk down the hallway in silence so deep
Keeping a constant watch over her as she sleeps
I hold her hand tightly fingers so small
Constantly questioning why you came to call
I watch her breathing so peaceful and warm
No evidence of the forces inside fighting the constant storm.
Will we ever be free of injections and blood testing
I sit and wonder as I watch her resting
The beep of the meter breaks the silence of the night
A small drop of blood tells me if everything’s alright.
The seconds count down to the final display
I wait with bated breath, knowing the repercussions from it will say
My heart sinks as I see the number is low
Another test done, but a lifetime more to go,
I try to wake her and force-feed glucose
How long until she is out of the danger zone who knows
Time passes by, while I wait for the number to rise
And I sit in the darkness and quietly cry.
How can you do this to someone so small?
As strong and as brave she can be,
She will always be my baby most of all.
But I have to stay strong and for her, I will fight,
And we will take you on with all our might.
We are teaching her to master and conquer this foe
You will not dare stop her, I have promised her so.
So don’t for one minute think you’ve won
This battle has only just begun.
Your time is up type 1, your time is now
The curtain is falling, and you must take your final bow.
So know this, little stars, we will fight until the end
And on that, you really can depend
With all the money that is going to be raised,
Thousands of childhoods will be saved
And the time is getting closer when you won’t have to be quite so brave.