A double blow
relaxing on this job,” she jokes. Her daughter Ksenia also has the condition .
Even though Michael, Ksenia and Alexander are now on insulin pumps that provide them with the required dose, the checks have not abated, nor can Gilly and Evelyn afford to relax.
“You can only hope their bodies’ remaining mechanism works sufficiently to ensure the blood–sugar levels are kept within safe boundaries,” says Evelyn. “It’s a gamble, and complications arise if diabetes is not managed properly over a period of time.”
Evelyn and Gilly tackle their children’s condition in their own ways, but both include meticulous planning for all eventualities. “I frequently travel long distances with Alexander and his older brother, Harry – to the UK, Canada, Sweden and Italy,” says Gilly. “There was a lot of air travel involved and I am always prepared, keeping in mind delays or diversions.
“Good management of diabetes lies in planning and preparation. Even to leave the house to shop takes consideration – you must always be prepared and think ahead. We eat healthily and exercise regularly. It hasn’t been easy – we’ve had ups and downs over the years.’’
Gilly remembers having to call an ambulance when her son collapsed after he encountered his first hypoglycemic low while on a skiing trip in Europe. “It was harrowing and I was very scared,” she says. “But because I was by his side at the time, I spotted him collapsing and managed to rush him to the hospital.’’
Then there were issues at school when some students made heartless comments about his lethargy and the fact that he had to take insulin injections. “It did make Alexander feel low for a while, but he soon came out of it and the boys realised his condition and began including him in all their activities.”
Evelyn has had much the same experience. “When Michael was first diagnosed with T1DM, it took 24 hours for his condition to stabilise,” she says. “When the doctor told Michael that he would need to take injections every day to get better and keep his body at a regular sugar level, he was so brave. The hardest part for us was when Michael asked the doctor ‘How long do I need to do this?’ When the doctor replied, ‘For the rest of your life’, all he said was ‘OK’. That was one of the lowest points in our lives.” Most parents don’t think to test siblings T1DM for the disease, since it is said to be rare. The Matafonovs had never thought of testing their daughter, Ksenia. “We felt it was unlikely that you could have two children in with diabetes, so we never gave it a thought,” says Evelyn.
But just over a year after Michael had been diagnosed, Ksenia started feeling very tired, and just wanted to sleep most of the time. One day in 2007, when Evelyn was away for a weekend, Ksenia took Michael’s home blood test as she felt her symptoms were similar to her brother’s. She was shocked when she tested positive for T1DM. “Our carefully shored up world came tumbling down again,’’ says Evelyn.
“But in time we all got on with it. Ksenia was 12 then and was feeling low for several weeks.