Total Raised: £111,280
Helen Baird, from Beeston in Nottinghamshire, told us how her family coped when her elder son, James, 14, was diagnosed with Type 1 diabetes.
JDRF (formerly known as the Juvenile Diabetes Research Foundation) funds research into Type 1 diabetes to improve lives with the aim of eradicating the condition for good.
Type 1 diabetes isn’t caused by an unhealthy lifestyle or poor diet – it’s an autoimmune condition where the immune system attacks and destroys the insulin-producing cells in the pancreas.
Around 400,000 people in the UK are currently living with Type 1 diabetes, 29,000 of them children, with a 5 per cent increase each year in children under five.
A person with Type 1 diabetes will have about 65,000 injections and measure their blood glucose levels more than 80,000 times in their lifetime.
For more information, visit jdrf.org.uk.
The Candis Big Give
There are estimated to be more than four million people living with diabetes in the UK and almost 800 people are diagnosed with Type 1 or 2 diabetes every day. Unfortunately, symptoms are not always easy to spot, which means sufferers are often quite ill by the time they are diagnosed. A fact that Helen Baird, 47, discovered when her son James fell ill a couple of years ago. “In February 2016, I noticed a change in James, then 12 – he became very lethargic, which I put down to teenage hormones. But as the weeks went on, he began to wet the bed, was drinking huge amounts but feeling constantly thirsty and he just didn’t feel right in himself. He became emotional and started to lose weight. We thought he was having a growth spurt and it all seemed like normal adolescence but when his clothes were almost dropping off him I began to wonder whether he was being bullied. He began to struggle to finish meals and one day he came home from school and said he was tired, he went to bed at 4.30pm and slept until 2pm the following day – this time, I assumed he’d contracted the nasty virus that was going round.
One evening, James, his sister, Olivia, 16, and his little brother, William, 10, went to my parents’ house for tea and James said he wasn’t hungry but drank a litre of fruit juice. Mum asked him to try to eat something and after one mouthful he was violently sick. I went to collect the children and my dad suggested that James could be very ill; it then dawned on me that there could be something seriously wrong.
The following day, I took him to the GP. James had never met the doctor so I took along a photo taken of James six weeks prior, at Christmas, to show how much he’d changed. She checked his water sample and remarked that there was a lot of sugar – as soon as I heard that, I guessed he might have diabetes. I remember sobbing with relief because I knew we would somehow manage diabetes and I’d got myself into a state thinking that he might have leukaemia or worse. I realised James had been having symptoms for at least five weeks – extreme thirst and tiredness, bed-wetting, weight loss and mood changes are all pointers towards Type 1 diabetes. The doctor told us that James had gone into diabetic ketoacidosis (DKA), which happens when the body runs out of insulin, and sent us straight to hospital. Staff were waiting for us at the Queen’s Medical Centre (Nottingham Children’s Hospital) and James was put on a drip with fluids for 24 hours as he was very dehydrated. My husband, Stuart, met us at the hospital in a complete state of shock, having assumed James’s illness was nothing more than a virus.
Within a few hours, a consultant, Dr Tabitha Randell, came to see us and told us about a trial for an artificial pancreas. Luckily for us, the hospital has an award-winning paediatric diabetes team who were looking to recruit young people newly diagnosed with diabetes to take part in a clinical trial for an artificial pancreas. She told us that if we went on the trial James would get an insulin pump – such pumps are in very high demand in the NHS and cost up to £3,000 if bought privately. Pumps are given to babies and tots as a priority and so the alternative was continual injections for James, around six times a day.
The clinical trial is headed by Dr Roman Hovorka with a team from the University of Cambridge. The new artificial pancreas tries to mimic what the body’s pancreas does behind the scenes, reacting to the blood glucose level and changing the insulin delivery every ten minutes. The system consists mainly of off-the-shelf components – a blood glucose sensor and an insulin pump – but the breakthrough has been to get them working together to monitor glucose levels closely and respond with an accurate dose of insulin with the help of a unique phone app. A groundbreaking innovation is an algorithm that predicts when insulin will be needed after eating and cleverly builds a record of how much insulin an individual needs after meals, and as it gathers more information about the person, it learns and adapts.
We were given lots of information to process and there was never any pressure for James to take part but when he felt better, we talked about the trial and he decided he’d like to be involved. It was quite a stressful time as James was diagnosed only three weeks before we were due to go on the holiday of a lifetime to Florida – something we’d been planning for two years. Because of this, they rushed everything through for us, but for the first week he had to inject before every single meal and snack, which was a nightmare. Thankfully James had to do this only for a week before he was given a pump.
Managing his diet is easier than we thought it would be as despite all carbohydrates being counted, James was relieved to learn he can generally eat what he likes, including sugary foods, in moderation. There are no injections at all, he inputs how many grams of carbs he’s about to eat and the pump calculates and administers the appropriate amount of insulin. Our holiday was fantastic and James was able to enjoy every minute – you wouldn’t have known that he’d recently been diagnosed with Type 1 diabetes.
It’s a fine balance for me as a mum to allow him independence and I’m constantly thinking I should be doing more for him, but James manages it all well. He’s very responsible and enjoys being in control of his condition. A real benefit of the artificial pancreas is that if he makes a mistake or miscalculates what he’s eaten, it tells him instantly so he can correct his insulin levels.
It wasn’t until we attended a JDRF information open day in Nottingham last summer, where we learnt so much about diabetes and treatments available, that we realised how lucky James has been. If we hadn’t been in the right place at the right time, we could easily have missed out on this amazing opportunity and James would be constantly injecting and checking his glucose levels. He lives his life to the full, he enjoys playing his electric guitar and playing sport at school and has signed up to do a Bronze Duke of Edinburgh’s Award later this year. The artificial pancreas technology is a real gift – James doesn’t have to worry about his blood glucose levels. At the moment, everything is going well, James’s school and his friends are very supportive and I never leave home without my phone in case of an emergency. I feel a bit sad when I see him with the sports bag he must always carry with him. It contains the phone for his pump, two spare injection pens in case his pump fails, spare needles and glucose tablets – it’s a constant reminder of his lifelong condition.
The trial is two years long and ends next March, there are five centres involved nationally and we’re hoping he will continue to have use of the pump afterwards, but it’s not guaranteed. James has check-ups every three months at the hospital, to monitor his diabetes and for the team to check his progress on the trial. The aim of this trial is for everyone in the UK with Type 1 diabetes to have access to the artificial pancreas before too long. The project is subject to ongoing research and crucial funding, but James is living proof that this innovative technology will be life-changing for so many people.
UPDATE: Money raised by the Candis Big Give is funding a clinical trial to evaluate the efficacy, safety and usage of the artificial pancreas developed by Dr Roman Hovorka.