A dou­ble blow

Friday - - Society Living Leisure -

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.

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