JDRF

“Our twins’ future looks brighter”

Jude Sutton, 40 from Manchester, tells us how JDRF has helped her and her husband cope with bringing up their son and daughter who both have Type 1 diabetes

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My twins Amelie and Albie, now eight, are like any other children their age, but they are also coping with a lifelong condition that plays an important part in their lives. Amelie was diagnosed when she was just two and a half. She was always thirsty, drank a lot and went to the loo all the time. I thought it was just the terrible twos because she was having tantrums, but looking back she must have been feeling high and then low, and we didn’t know. She began to have panic attacks if she didn’t have a bottle of water with her, and when we went to see my parents one weekend, she insisted on having five bottles of water in the car.

Both my parents have medical backgrounds – my dad’s a doctor and my mum a nurse. They noticed that Amelie had lost weight and suggested I take her to our GP for a urine test. The test showed there was sugar in her urine, so they did a blood test, which also showed a high level of sugar. She definitely had Type 1 diabetes. We were sent to A&E with a letter and within an hour of being on the ward we were told we had to administer her first injection. I was so nervous, but the nurse taught us how to do it and within a short time Amelie was much happier. Although the needles for the insulin were quite small, the cannula in the hand for bloods to be taken was much thicker and very distressing for such a little one. It was awful to see her so upset and we felt helpless because she had to have the medication. We stayed overnight at the hospital and left with a huge amount of information to study – it was quite overwhelming. We had boxes of needles, testing kits, and just had to get on with it all.

When the twins turned three, Albie began to have similar symptoms to Amelie, and a week later he was also diagnosed with Type 1. The children now have pumps that manage their insulin intake, but at the time they needed up to six injections a day. Every time they ate they would need an injection to help them digest the sugar in their food. My husband, Luke, would have to pin them down and I would inject. It was just horrible, especially at bedtime when the injection had a different type of insulin that had to last longer. The insulin hurts as it goes in, so every bedtime was traumatic for them.

The pump is much better – it works with a little cannula that sits on the skin and is changed every three days, which is much easier for us to manage. The constant drip-feed of insulin means there’s no need for the nightly injection and they take it off for sports and bath time. They have finger pricks to test their blood around ten times a day and once in the night, plus also if they feel their blood sugar is dropping. Fortunately, their primary school was proactive and made sure that the children were statemented immediately, so that they could get the help they needed. Their teaching assistant’s husband is Type 1, so she understands perfectly what’s required and gives them one-to-one care.

I heard about JDRF when the children were first diagnosed. I got in touch and they really did help us understand the condition and provided us with some much-needed support. They are at the forefront of research into Type 1 diabetes and the progress they are making in efforts to cure, treat and prevent it has given us hope for our children’s future. When a fundraising position came up 18 months ago I knew I had to go for it, to be part of such an inspirational team. Since then I’ve completed marathons and the Three Peaks Challenge and Luke has started training for an Iron Man to raise money for the charity.

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Working for JDRF has taught me more about the condition and I’ve seen first-hand just how technology is helping. They have played a large part in the development of artificial pancreas technologies and are working to make it available in the UK. A ‘smart’ glucose-responsive insulin could mean just one injection once or twice a week with no blood tests or weighing food before eating as it turns on and off when needed. This could allow Type 1 sufferers so much more freedom. It’s being developed after a drug company had the idea and the charity agreed to fund it. We’re searching for a cure but making it easier to manage is the next best thing.

Amelie and Albie don’t let diabetes get in their way and we tell them they can achieve anything they want to in life. It’s only the constant blood tests that get them down and
if they’re having a bad day, I console them with all the good things I’m hearing about at work. Within the charity there’s a working group of 15 people who have Type 1 or have relatives with it. We’re passionate and committed to raising crucial funds in the hope that those with Type 1 diabetes can lead as near normal lives as possible, as soon as possible

TOTAL RAISED £92,141

THE FACTS – JDRF

  • JDRF supports research into Type 1 diabetes with a mission to accelerate breakthroughs to prevent, cure and treat it and its complications.
  • 400,000 people in the UK have Type 1 diabetes, 29,000 of them children.
  • A child diagnosed at the age of five faces more than 19,000 insulin injections and 50,000 blood tests before they reach their 18th birthday.
  • 90 per cent of those diagnosed have no family history of the condition.
  • Type 1 isn’t caused by an unhealthy diet or poor lifestyle. It’s not known how its triggered, it can’t be prevented and can affect anyone at any age.
  • It is an autoimmune condition – the immune system destroys crucial insulin-producing cells in the pancreas.
  • The onset happens in a matter of days and anyone experiencing symptoms must see a GP immediately.
  • For more info visit jdrf.org.uk.

BIG GIVE UPDATE

JDRF will spend the money raised to fund ‘smart insulin’ research at the University of Birmingham. Research like this could lead to a once-per-day injection that would improve quality of life for people with Type 1 diabetes and reduce the risk of complications
in the future.

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