The Silent Challenges of Children Living with Type 1 Diabetes

Jun 09




Helen Whitten

Posted In


The Silent Challenges of Children Living with Type 1 Diabetes

My beautiful granddaughter, Emmeline, was diagnosed with Type 1 Diabetes at the age of 8.  She had been tired, thirsty and going to the loo frequently.  Luckily her mother looked up the symptoms and she was taken to her GP who immediately sent her to St Mary’s Paddington.  There she stayed for several days while they diagnosed her Type 1 and endeavoured to stabilise her condition.

It was here in the hospital that Emmeline, my son Rupert and his wife Jendy, learnt about what it meant for Emmeline to learn to live with Type 1 and for them, as parents, to support her and manage this condition.  It was here in the hospital that they came into contact for the first time with JDRF, the Junior Diabetes Research Fund, and all the wonderful support they give to children, their parents and to the specific research involved in both understanding and managing diabetes but most importantly to finding a cure.

My son and his family were in shock. So was I.  I shall always remember taking his call and having to go and sit down for several minutes afterwards as I digested what this meant. Type 1 Diabetes is an autoimmune disease, unlike Type 2. It involves finger pricks, blood tests, injections, the worry of her levels going either too low or too high, the impact on her physiology over time.

It was a huge learning curve for Rupert and Jendy.  The testing kits, the administration of the finger pricks and injections, learning that everything she ate or even drank had to be calculated for the carbohydrate content and then calculated again to consider what she needed once any food had been weighed precisely.  Like other parents in this situation, they experienced many sleepless nights watching over Emmeline, fearful that she might lose consciousness or worse.  It’s tough enough to be a parent but with this condition everything suddenly gets harder and more complicated.

They, and I, were also in grief.  I believe we still are.  The grief that our beloved girl has to manage this every day and will have to do so for the rest of her life.  And that they, as parents, cannot watch her enjoy a care-free childhood in the way that other children do, nor now, as she becomes a teenager, will she be able to enjoy as carefree an adolescence as her friends can.  For sure she will need to be even more wary around alcohol and always to keep measuring her carbs and keeping track of her levels. It is a relentless 24/7 process for her and her parents, as it is for all who have or are caring for someone with the condition.

A few months after diagnosis luckily Emmeline was able to go onto the continuous loop system with the Dexcom monitor and insulin pump. It’s a game-changer in terms of managing Type 1 as it continuously measures her blood sugar levels and the pump administers insulin to keep her balanced. The algorithms in these systems were developed using JDRF funding. In addition to the continuous loop system both her parents can now track what is happening via their Apple watches so that they could be in a business meeting in the City somewhere several miles away from her but be able to see if she was going low and ring the school to alert them to take action and give her glucose.

But even with the pump system her levels can vary.  As a child grows, as she does PE at school, or as her hormones rocket around, her body can go out of balance.

Inevitably this limits her normal childhood activities such as going for a sleepover at her friends’ houses.  How can you ask a friend’s parents to get up in the middle of the night to adjust the pump should it need to be calibrated?  And so she would come and stay with me because of course as her Granny I will never mind getting up in the night to make sure she is healthy. And gradually as Emmeline has learnt to manage herself, and her friends’ parents have acclimatised themselves to her needs, she does now go for occasional sleepovers and school trips. But these are not without their worries and hiccoughs.

And yet, now aged 13, she is marvellously brave and stoical and gets on with life, and we are all very proud of her.  She can still have bad days and her parents still have to be up at night when her levels are out of kilter and this will continue for her lifetime – you may have read about how the actor James Norton, who is Type 1, has to manage his condition on stage and secrete glucose tablets amid the props of the plays he is in.

There are around 35,000 children and young people diagnosed with Type 1 in the UK.  My cousin’s grandson in Switzerland was diagnosed at the age of 2 and some children are diagnosed even earlier, so there are a large number of families experiencing the challenges of caring for a child with this autoimmune condition.  The work JDRF do to support the children and their parents makes a huge difference.

JDRF’s information was hugely supportive in helping Rupert and Jendy become familiar with the challenges involved, and also what to expect in the future – it provides them, the whole family and other children and parents with real hope. JDRF has research programmes that are tackling the multiple ways in which this condition can be managed, prevented or cured across technology, immunotherapy, stem cell treatments and more.

And so I ask that you donate some money to JDRF because not only do parents of Type 1 children, and the children themselves, receive such wonderful emotional and practical support from this charity but also, and so importantly, JDRF are working every day towards a real cure for this debilitating and demanding condition.  We really pray that there will be a breakthrough soon, and of course this requires investment in the research.

On June 22nd I am taking part in the JDRF One Walk to fund-raise and if you are able to donate a sum to this, however large or small, we shall all be eternally grateful.  The link is


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