Jack has neonatal diabetes, a rare genetic type of diabetes which can often be mistaken as Type 1 diabetes. Diabetes UK funded research helped to get Jack the right diagnosis and show that for some people it could be treated with tablets instead of insulin. Emma was told for Jack to switch – and found that their lives turned around quickly thanks to what Emma described as a miracle.
Emma and Jack
Age 46 and 19
Jack has neonatal diabetes
"Within just a few weeks of switching treatment, it became obvious that Jack’s blood sugar levels were really stable. He had stopped collapsing on the floor and he suddenly started smiling and laughing. For us, it really was a miracle."
Emma and Jack's journey with diabetes
- Jack was diagnosed aged just 17 days with Type 1 diabetes.
- Jack struggled with his blood sugars, which would go up and down for seemingly no reason.
- Emma was testing him 20 times a day.
- Discovered that Jack might not have Type 1 .
- His diagnosis was changed thanks to research we helped to fund, and now lives a much happier life.
Diagnosis and Jack's early years
It was like a living hell before Jack got the right diagnosis. We were constantly monitoring him 24 hours a day – we didn’t sleep. He had constant hypos and his blood sugars would go from one extreme to the other. One minute he’d be at 30, next minute I’d be calling ambulance because he was having seizures at 0.8.
I never knew whether he was going to be alive from one day to the next. Looking back now I don’t know how we survived it.
He was diagnosed with Type 1 at 17 days old. For the first 5 years of his life, he just felt awful. He was an unhappy little boy, crying constantly.
We had to test him 20 times a day. His little fingers were black and blue and he’d lost sensitivity so used to chew his fingers right down.
Getting Jack's diagnosis right
My mum read in the newspaper about a boy that sounded just like Jack, whose diabetes was because of a genetic change. I looked up the Professor the article mentioned - Prof Hattersley - on the internet and emailed him. He said, “yes, Jack’s potentially got the gene for neonatal diabetes”. 10 days later he’d been tested and we’d been told “yes, it’s not Type 1”.
Getting Jack’s diagnosis and treatment changed felt unbelievable. I was incredibly emotional, crying all the time. It took 10 days for him to transition from insulin to tablets. He’s never had insulin again since then. And the impact was instantaneous, his HbA1c went down from 12% to 5.2% in 3 months.
Life afterwards was so stable. Over time we didn’t even worry about his diabetes. I hardly ever test his blood sugar anymore, because it’s just so stable. As long as Jack takes his medication, he’s absolutely fine.
How Jack's life changed
Medically and physically he’s just more stable and well. He was able to start learning, instead of feeling ill all the time. After his neonatal diagnosis, he started walking for the first time and 6 weeks later said “hello Mummy”. Until then he’d never said a word.
He lights up a room. Such a charismatic, funny boy. Now he spends every day being happy, making up for life. He’s got loads of friends – it was his 18th party last year and 160 people came.
Research saving lives
I completely believe this research saved my son’s life. If it wasn’t for Diabetes UK and those incredible researchers, I’m sure that Jack wouldn’t be here. The Exeter researchers are just the most amazing and humble people – they genuinely save lives.
Jack would definitely be dead if it wasn’t for this research. No doubt in my mind that he’d be dead. It’s given me my son back.