Just as important as raising funds to help find the cure for type 1, is raising awareness about this unrelenting condition and acting as a mouthpiece for those who are too little to shout about it themselves.
“I know from personal experience of the challenges that come with a diagnosis of type 1 diabetes. But these challenges are all the greater when type 1 diabetes affects a young child. Parents need the right kind of advice and support to help them navigate through the difficulties and ensure that their child can thrive. That’s why the work of Sugarplum Children is so important – supporting children and families, and fundraising for JDRF’s efforts to treat, prevent and ultimately cure type 1 diabetes.” The Rt. Hon Theresa May, Prime Minister
“I was very interested to read about your charity, Sugarplum Children, and Aliena’s own brave battle with type 1 diabetes. Sugarplum Children seems to be a wonderful initiative: you have already raised so much money to go towards the important work of JDRF and I wish you the bets of luck for the future.” The Rt. Hon David Cameron, MP
Since our daughter Aliena was diagnosed with type 1 diabetes at the age of just two and a half, my husband and mine’s lives have changed dramatically. For her, it means a lifetime of constant blood tests and injections, highs and lows, and a certain lack of freedom enjoyed by most small children as a result of her blood needing constant monitoring.
For Charlie and I, it has been almost three years of trying to understand the neverending complexities that come with this disease; learning how to inject her, how to understand her hugely varying blood glucose levels (and how dramatically these affect her moods and behaviour), what she should eat, what she should avoid, and how to calculate the right dosage of insulin which must be given every single time she eats – if we give her too much she is in danger of having a hypo; too little, she goes hyper, both of which can have serious (even fatal) consequences.
“OVERNIGHT, WE WERE TOLD WE HAD TO BECOME THE DOCTOR – HER LIFE IS LITERALLY IN OUR HANDS.”
It has been a serious learning curve and one, which will continue for the unforeseeable future.
At the moment, this is an incurable disease and she, and the thousands of other children like her, will have to endure the same daily procedure every single day for the rest of their lives: 6-8 finger prick blood tests and 4-6 injections every day (or pump infusions)… which as traumatic as it can be at times is sadly a necessity in order to keep her alive.
“APPROXIMATELY 3650 NEEDLES GOING INTO HER TINY BODY EVERY YEAR.”
It has been devastating, overwhelming, baffling and frustrating, with tears shed on a daily basis – however many books we read on the disease, or people we speak to who have type 1 diabetes themselves, it became clear that dealing with the condition in someone so young, who can’t say when they are feeling high or low, and who doesn’t understand why they can’t eat what their friends eat, or why they keep having to have their blood tested etc, is entirely different.
As a result I came up with the idea of Sugarplum Children – a website and fundraising initiative aimed at children who have diabetes, which will offer help, advice and support to both them and their parents, as well as friends and relatives for whom a basic understanding of the disease is a necessity. I would like it to become a forum for children to swap stories and most importantly, to realise that there are other children like them; that they’re not the only ones with this condition, and for parents to feel less bewildered.
As well as managing the website, my real passion is fundraising – with my target being to raise £1 million for JDRF, which I KNOW, that with everyone’s help and support, is achievable. No-one’s childhood should be defined by needles and carb counting, and I will do all I can to help find the cure, and to save other children from the same fate as our brave little star.