For the sake of Jonty, mum gets set to tackle marathon
Three-and-a-half-year-old Jonty Roberts is a whirlwind of tousled blond hair, with a cheeky grin and a larger-than-life character.
He rushes around his Midhurst home with his brothers, 22-month-old Patrick and five-year-old Fergus, without a care in the world.
But the bright red harness around his chest which cradles a computerised insulin pump tells a different story.
A tiny plastic tube attached to the pump disappears under his clothes to a canular under his skin and constantly drips insulin into his little frame.
For Jonty was one of the youngest children in Britain to be diagnosed with diabetes at just 14 months.
To add to his problems, last year the family learned that Jonty also had MODY 2, a tiny genetic flaw acting like a faulty thermostat which could be the reason his blood sugar sometimes plummets with devastating speed.
Jonty is the only child in the country to have been diagnosed with both diseases and he is one of only three in the world, which means very little is known about the complications this combination may cause.
And the fact he was diagnosed with type one diabetes at such a young age is a worrying international trend with increasing numbers of very young children falling victim.
For his parents Racheal and Edward it means keeping a round-the-clock watch on Jonty, taking his blood sugar levels at least six times every day and monitoring everything he eats and drinks.
They live in constant fear of the frightening episodes when his
blood sugar soars or plummets and he can pass out just minutes after having been racing normally around the house.
"It was terrifying at first before we had the pump, when we had to give him five to six injections a day," admitted 35-year-old Racheal.
"I still get terrified now, especially if I'm on my own, if Edward is out. I couldn't do it on my own all the time, we do this together – it's team work.
"It's such a complex disease to manage in a child so young because it's hard to control when you don't know what Jonty is going to eat, when he is going to eat and how much exercise he is having."
"Even now, with the pump, we still have to get up in the night to check his blood sugar levels and if he has caught a bug we have to do it every two hours through the night.
"It's frustrating when people say he will grow out of it, because he won't. Our only hope is that the JDRF (Juvenile Diabetes Research Foundation) will continue to get funding and carry out research which will lead to a cure."
In fact JDRF is the only charity dedicated to funding research to find a cure for type one (juvenile) diabetes, which strikes children suddenly, makes them insulin-dependent for life, and carries the constant threat of devastating complications.
So it is that hope and the incredible support given to the family by JDRF which has led to Racheal putting on her first running shoes and training for her first marathon in the quest to raise 2,000 for the charity.
She is following in the footsteps of Edward, who cycled from London to Paris on a similar fundraising mission.
Their nightmare began towards the end of 2006 when Jonty started losing weight dramatically.
"He would suddenly start crying for juice, water and milk and cry if he saw another child with a drink," said Racheal.
"I suspected the disease because my grandfather suffered from diabetes, but doctors were a bit dismissive as Jonty was so young."
But Racheal's worst fears were soon confirmed, although Jonty's type one (juvenile) diabetes, is completely unrelated to her grandfather's type two disease.
"We spent a week in hospital and were taught how to inject and check blood sugar levels," said Racheal.
"But as the months progressed, because of Jonty's age, the diabetes was very hard to control."
Eventually the Roberts family were referred to St James Hospital in Leeds, one of a handful of paediatric pumping centres in the UK and Jonty became one of only 100 children in the country to go through the unit.
"He was rushed through because he was having such bad episodes," said Racheal. "One day he had been rushing around as normal, then Fergus came through and told me he had fallen asleep in the hall and I found him just lying on the floor."
One of the things the pump enables the Roberts to do is to give Jonty tiny amounts of insulin constantly through the tube and adjust the dose when he eats, without constant injections.
Jonty also has a continuous glucose monitor which can be inserted under his skin if he is unwell and sets off an alarm when his blood sugar levels alter. All this has meant his mother and father have had to learn a great deal about his condition very quickly.
"The learning curve has been astonishing," said Edward, "in fact the curve has been a cliff face."
Anyone who would like to sponsor Racheal's London marathon run in April for JDRF can do so on line by visiting www.justgiving.com/rachealroberts
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Weather for Midhurst
Wednesday 23 May 2012
Today
Sunny
Temperature: 14 C to 25 C
Wind Speed: 10 mph
Wind direction: North
Tomorrow
Sunny spells
Temperature: 13 C to 25 C
Wind Speed: 12 mph
Wind direction: North east
