‘You never know when it’ll get dan­ger­ous’

Friday - - Society Living Leisure -

life–chang­ing and life–threat­en­ing con­di­tion that has no cure. “It was a mas­sive shock,” says Eve­lyn.

Across the city, on Palm Jumeirah, seven– year–old Alexan­der Geisler had been steadily los­ing weight over the pre­vi­ous months, but his mother Gilly had put it down to grow­ing up.

“Then one day, he just col­lapsed at home, and it was to­tally un­nerv­ing,” says Gilly. “One mo­ment he’d been this happy, healthy kid, and the next a white–faced ghost. He be­came very ill, tired and lethar­gic. We couldn’t fathom what it was, we just knew he was ter­ri­bly ill.’’

Ex­tremely wor­ried, she rushed him to the emer­gency unit of the Amer­i­can Hos­pi­tal, Dubai, where he was sus­pected to be suf­fer­ing from ei­ther pneu­mo­nia or di­a­betes. A blood test con­firmed it was the lat­ter. “It was a day that changed his and our lives for­ever,’’ Gilly says.

The two fam­i­lies, who didn’t know each other, went through a blur of check–ups, in­jec­tions and stress – un­til the moth­ers met.

“One af­ter­noon two years ago, I was at Rep­ton school watch­ing Michael play foot­ball when I saw a woman check­ing her son’s sugar level. I watched from afar, try­ing to work out how old the boy was, and then went up and in­tro­duced my­self,’’ says Eve­lyn.

From ex­chang­ing tele­phone num­bers and meet­ing up for cof­fee, the two women be­came firm friends. “It was very com­fort­ing to know an­other mother of a di­a­betic,” says Eve­lyn.

It wasn’t long be­fore the pair de­cided to share their knowl­edge and start a sup­port group, I am Num­ber One.

“The fact that we had no one to turn to, and that we had to find out ev­ery­thing about the con­di­tion for our­selves is what prompted us to start a sup­port group for fam­i­lies with Type 1 di­a­betes,” says Eve­lyn. I am Num­ber One was formed in Novem­ber 2011, and now has 20 fam­i­lies meet­ing once a month at the Bal­ance Café at Oasis Cen­tre.

Not con­tent with shar­ing their ex­pe­ri­ence in per­son, the two mums de­cided to write a book­let too. They have al­ready be­gun work on it.

“The idea of a book­let came about af­ter Eve­lyn and I talked about our ex­pe­ri­ences af­ter our chil­dren were di­ag­nosed,” says Gilly. “No one had told us about what we should do about any­thing – what should we do to en­sure teach­ers were aware of the con­di­tion; would the teach­ers be able to recog­nise the symp­toms early enough to pre­vent a sit­u­a­tion? How do we best store all the nec­es­sary items and en­sure that we never run out? What items were in fact nec­es­sary, and if I can­not get hold of some­thing, what will I do? We wanted to pro­duce some­thing that was ‘easy speak’.”

They pitched the idea to Land­mark, who agreed to help pub­lish and dis­trib­ute the book­let. It will be avail­able early next year.

“The book will be writ­ten from the point of view of two par­ents, who take you through the first steps af­ter that ini­tial di­ag­no­sis, when you are told your child is a di­a­betic, and you are told all sorts of things to look out for, names that you can’t even pro­nounce, things you have never heard of,” says Eve­lyn. “We wanted it to be read from a non–med­i­cal point of view, a book that you can have in your bag to re­fer to when you have that lit­tle doubt about some­thing. We hope to give par­ents the con­fi­dence to get through a sit­u­a­tion they’d never thought of. A great writer is help­ing us put the book to­gether. She’s taken all our thoughts, and taken a heart­felt in­ter­est in what it re­ally means to be a par­ent of a di­a­betic.” T1DM – or in­sulin–de­pen­dent di­a­betes – oc­curs when the pa­tient’s pan­creas pro­duces lit­tle or no in­sulin, the hor­mone nec­es­sary to carry glu­cose to the cells where it’s con­verted into en­ergy. There’s no cure; T1DM can be con­trolled only by in­ject­ing in­sulin on a reg­u­lar ba­sis.

“Man­ag­ing di­a­betes is a bit like play­ing Rus­sian roulette; you never know when it’ll get dan­ger­ous,” says Gilly. “We were dev­as­tated when Alexan­der was di­ag­nosed in 2006, as no one in our fam­ily has this con­di­tion.”

Sur­pris­ingly, Alexan­der took it fairly well, even learn­ing to in­ject him­self with the right amount of in­sulin four times a day. He didn’t let it cramp his style, con­tin­u­ing to play rugby, and even learn­ing to scuba dive and ice–skate.

But it took a lot of courage on the part of the Geislers to al­low him to lead a nor­mal life as peace of mind is the first ca­su­alty of par­ents with Type 1 di­a­betes chil­dren.

Eve­lyn learnt it the hard way, when her hus­band saw Michael hav­ing con­vul­sions one night in his sleep.

Michael was rushed to the hos­pi­tal and a test re­vealed that his blood glu­cose was in­cred­i­bly low. The amount of sports he’d been play­ing had up­set the body’s glu­cose lev­els, lead­ing to con­vul­sions. It could have caused him to slip into a coma.

Since that traumatic night, Eve­lyn hasn’t had a full night’s sleep. She wakes up ev­ery two hours to check on Michael, 15.

If she sus­pects some­thing is wrong, a sim­ple jab on his finger while he’s sleep­ing means she can check a droplet of blood for his blood glu­cose lev­els. Then it’s nap time for an­other two hours un­til the next jab. “There’s no

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