Finding out your child has a life threatening disease

Aurora James

No parent ever thinks they're going to hear that their child has a life threatening condition. When it happens, you are in shock for a long time.

Despite considering myself well read, I had never heard of Type 1 diabetes. The disease is in the news all the time now, particularly Type 2, but rarely do you hear any explanation between the types, or what they are.

My eldest child had just started secondary school and was busy getting used to new routines, extra sport and longer days. Her appetite suddenly grew, she lost weight and she had an increasing thirst.

However, she was happy and active, and seemed so well. I did, fleetingly, think about diabetes because she was so thirsty all the time, but almost straightaway dismissed the idea because she wasn't overweight.

Over just a week, things changed. She got up in the middle of the night to drink water from the toothbrush holder in the bathroom, she was unusually tired and had blurry vision. By now, I was really worried. I typed in 'diabetes' into the computer. All her symptoms were listed under 'Type 1 diabetes'. The article said the condition was fatal if untreated, and to seek immediate medical attention.

A simple finger prick test showed her blood sugars were dangerously high. She was diabetic. We were rushed into hospital. The next few days were a blur. I watched my child inject herself for the first time with insulin, her hand shaking. I remember thinking how 24 hours earlier my biggest concern that week had been what we were going to have for tea.

The insulin gave her a warm glow, she looked healthy. When she was admitted into hospital, I'm ashamed to say she weighed just four and a half stone. Just two months after diagnosis, she'd gained nearly two stone and looked far better.

Now, over two years later, we really are still taking it all in. Our lives have changed completely. We have lost the freedom to do anything spontaneously. Everything must be planned, with medical equipment, needles and blood test kits with us all the time. Insulin keeps my child alive. It is not a cure.

There are frequent, regular trips to hospital and an annual eye tests to prevent her going blind. We must have spare glucose and carbohydrate snacks available all the time or she could go into a coma. She copes well. Looking at her, you'd never know anything was wrong. It's an invisible disability.

Nothing she or I did has given her Type 1 diabetes. Medics do not yet know what causes Type 1. Some families have lots of relatives with it, other, like us, none.

With Type 1, the body inexplicably attacks the cells that make insulin, so you have to manually manage your body's energy levels all day, every day, for the rest of your life. Until they find a cure. Meanwhile, my child has to do over 3,000 blood tests and injections every year.

The Juvenile Diabetes Research Foundation is the charity focussing on Type 1 diabetes. The Duchess of Cornwall has just become its President. It strives to raise funds to help get better treatments and a cure. My child has become a Youth Ambassador for the charity - to help raise awareness of the condition and and funds for research. Her biggest problem is people assuming she has given herself the condition. We need to differentiate between Type 1 and Type 2 diabetes. Either way, diabetes is eating up huge medical resources and we need to tackle it.

It's a horrible thing to live with - and I don't know how she does it. Sometimes she breaks down with the stress and just wants to forget she has it. It happened once, and she stopped doing her injections. The result was a dash to hospital and a painful and lengthy stay while she recovered from the damage caused.

Cases of Type 1 diabetes are on the increase in children by 4% a year. The symptoms can at first be subtle.

Type 1 symptoms

Extreme thirst

Frequent urination


Increased appetite

Unexpected and sudden weight loss

Sudden vision changes

Fruity odour on breath (ketotic breath)

Stupor or unconsciousness. These may occur suddenly.

If you, or someone you know is experiencing these symptoms you must go to your doctor immediately. If left untreated, Type 1 diabetes is fatal.