On the day five years ago when my daughter Izzi, then aged 10, was diagnosed with type 1 diabetes, her seven-year-old brother Rowan was reluctant to visit her in the hospital. "Is she going to die?" he asked gravely. It was hard to reassure him through my tears, as I had only the vaguest idea of what type 1 diabetes was. I now know that, without insulin, which she will need to inject multiple times every day for the rest of her life, the answer would almost certainly have been yes.
Type 1 diabetes is an autoimmune condition in which insulin-producing cells in the pancreas just give up. No one knows why, and there is no cure. Izzi did nothing to cause this to happen and we have no family history of the condition, so, for us, there is no genetic link. She was just unlucky, like the 400,000 other people in the UK who have it. The condition is a life sentence: every organ in her body is under constant attack and the only defence is to pump herself full of insulin.
We only realised something was wrong when Izzi started to drink large quantities of water. At first I was pleased: I had always thought she didn't drink enough. But when one day she forgot to take her water bottle to school and went into a massive panic, I began to suspect there was a problem. We later learned that the need to drink lots was a result of her body's attempt to flush out the excess sugar in her blood. Insulin is the hormone that acts as a key to unlock pathways between the blood and the body's cells, which need the sugar for energy. Without insulin, the concentration of sugar in the blood can build up to life-threatening levels.
We were fortunate as our GP rushed Izzi straight to hospital. A quarter of the 2,000 children diagnosed annually with type 1 diabetes become seriously ill, and 10 die each year from preventable diabetic ketoacidosis, because doctors miss the early signs. It is more common among children than meningitis, but few parents (me included at the time) are aware of the symptoms that, along with excessive thirst, can include: frequent urination, bed-wetting, weight loss, hunger, blurred vision, vomiting, abdominal pain, thrush and lethargy.
In many ways our carefree and spontaneous life died the day of Izzi's diagnosis. Organising medical equipment, testing blood, measuring food and adjusting doses of insulin soon became part of our daily routine. The finger-prick blood tests to check blood sugar levels have to be done at least eight times a day to see if she needs to give herself more insulin (if the levels are too high) or eat something sweet (if the levels are too low).
I mourned the loss of Izzi's simple childhood, where she could run around with her friends, eat when and what she wanted, and enjoy school. Now she has to sit out of lessons if her blood glucose levels soar or plummet, and skip school for frequent hospital appointments. Exams are problematic as the stress sends her levels sky-high, with profound effects on her ability to concentrate.
Teachers and friends will say: "She looks fine," when I know that her blood glucose levels (which are measured in millimoles per litre) are in the high 20s (for a non-diabetic they should be between four and eight mmol/L), and she feels as if every cell in her body has a splitting headache. Or, unthinking friends will say she is lucky to be able to eat sweets in lessons. Sweets hold no pleasure for her now. They are medicine she needs to take to combat low levels of blood sugar.
Managing type 1 diabetes is notoriously difficult, which can be extremely demoralising. No matter how hard she tries, Izzi will always fail to keep her blood sugar levels constant and in range for any length of time. There are so many things that can affect her and their impact is unpredictable. An activity can result in her levels shooting up, which makes her feel dreadful, whereas at another time it will cause them to drop so low that she gets blurred vision, shakes uncontrollably and can't walk. Some of the worst times are during the night when I worry that her blood glucose levels will either go so high or so low that she may become dangerously ill and not wake up.
Amazingly, Izzi counts herself as fortunate. Rather than having to inject herself with insulin, she now has a pump permanently attached to introduce a constant, adjustable flow; she only has to insert a needle and tubing into her stomach every two days, although she still has the daily regime of finger-prick tests. Like all of the other inspiring people we have met who have type 1 diabetes, she takes on this massive and relentless burden of responsibility with patience and good humour. But underneath she yearns for a cure so she can live the life most people take for granted.
Earlier in the year, Izzi joined 60 other young people with type 1 diabetes for a lobbying event at the Houses of Parliament, organised by the Juvenile Diabetes Research Foundation, aimed at persuading the government to commit more funding to research. It would make economic sense: the cost of type 1 diabetes to the UK is nearly £2bn a year and is set to rise to more than £4bn by 2036. Cases increase by 4% year on year (more for the under-fives), and these children need intensive intervention for the rest of their lives. Insulin was developed 90 years ago and while we are grateful that it keeps our children alive, that's all it does. It is high time we found a cure.
