Award-winning playwright Simon Vinnicombe’s baby son George was just six months old when he fell gravely ill with a shock diagnosis of type 1 diabetes. He talks to PharmaTimes about life with the disease and his hopes for a cure
Can you describe the events that led to George’s diagnosis?
George got a tummy bug. My wife and I had the same thing. Only George never seemed to quite shake it. He wasn’t really at one hundred percent for about two weeks, and then, finally, he woke up one morning with restricted breathing. We just thought he had a chest infection. The doctor thought the same thing, but, as a precaution, said we should go to A&E. Around five hours later I was told George was going to die.
How did he develop the condition?
It’s an autoimmune condition. He did have exactly the same virus as Tracy and I, but something caused his immune system to attack his pancreas. Now George requires insulin twenty-four hours a day.
What does a typical day caring for George involve?
His blood sugar is monitored using a CGM (Continuous blood glucose monitor), which gives us a guide to the glucose levels in his blood. This alarms when his blood sugars go too high (hyper) and when they go too low (hypo). We also need to give him blood test to ensure that data is accurate. I would say that we check his blood, administer some form of medication as many as forty times a day. We wake on average, seven times a night to treat him. George has a base level of insulin which delivers different amounts of medication every hour of the day. He also needs insulin for the times that he eats. And the amounts of insulin vary on the time of day. There are so many variables with this condition and it’s complicated by the fact that he’s insulin sensitive, so tiny amounts of insulin can cause big swings in his blood sugar levels.
What coping strategies have you developed?
We support each other. My wife and I really look after each other. Waking seven times a night is the average. And it takes its toll. We’re never more than fifteen minutes away from his school and only my mother knows how to care for him. The hardest part of all of this, is the idea that it is forever. When he was diagnosed we were told there would be no cure. And that is incredibly tough to cope with. It’s so demanding and I think I have been guilty of trying to fight it. And believing that I could somehow ‘win’. Or master it all.
But the truth is that no two days are the same, it’s like chasing a balloon and it’s a real battle of endurance. We are constantly living with the fear that George will not wake up again when we kiss him goodnight. And I don’t think my wife ever goes longer than fifteen minutes without wondering what his blood sugar levels are. The only way to cope is to take ownership, read as much as you can about the condition, keep diaries and download all the data and get the best control you can. He gets his HBA1C which is a test which gives a guide as to his average levels over a period of three months. When that number comes back in range, you know you are getting as close to ‘winning’ as you can I guess. But it’s more about knowing that your hard work is paying off.
What could make the biggest difference to George’s everyday life?
A cure! Silly answer I suppose. But there are lots of recent developments that could be utterly revolutionary for George. The ultimate goal would be to eradicate the condition entirely. Smart insulin is an example of a development that could mean that while George might not be cured, we would know that he would be safe. And not living in terror of him slipping into a coma or being back where he was in diagnosis, with DKA (diabetic ketoacidosis) and his blood turning to acid.
I think it’s impossible to articulate what a cure would mean for us. When I allow myself to think about it I weep. Because there’s just too much pressure and no release. And the feeling that it might be forever is completely crushing. I know other families going through it – the moment you talk about a cure you can almost see them dare to realise it for a moment and it’s too much.
What would you say is the greatest challenge of caring for a child with type 1 diabetes?
For us, it’s causing him pain of any kind. Cannula changes can be tough. I’ve heard him have a nightmare where he was shouting out ‘Get off Daddy! No! No! No!’ and it shattered my heart. I think that him being pulled away from exercise or playing or just being a kid and being told to stay still because he’s hypo, I think anytime that you are reminding a child of life and death feels utterly wrong. It’s really important that children are allowed to explore the world with freedom and you feel like the condition snatches that from him.
My wife and I can take the sleep deprivation and the worry but we can’t really know the impact on him. He’s such a remarkable, giving and loving little boy but you do rail at the injustice of it all. I’d like to take all of his pain and eat it, let is explode inside of me, but I know I can’t.
Are you happy with the NHS care you have experienced thus far?
They saved George’s life. Not just that – when he was in intensive care they didn’t just make him better, they cared for him. It was really beautiful to witness. He was cuddled, sung to, they made a book to document his bravery. The nurse who saved George’s life has become a lifelong friend of ours. His consultant gave me his mobile number and told me I could ring him on Christmas day if I wanted to (this was at a rough time). His care has been exceptional on a human level and a professional level too. I really feel like a lot of people invested in him.
Could any aspect be improved?
In this country you are at the mercy of postcode lottery. As a Londoner I think I am a lot more privileged than I might be if I lived outside of the city. More needs to be done for people with less access to the internet. Or whose first language might not be English. It’s making sure that those who might be disadvantaged in some way still get the same opportunities and are aware of the possibilities for their kids.
What advice would you give parents whose child has just been diagnosed with type 1 diabetes?
Knowledge. Find it. Accrue. Arm yourself up with everything you can. Don’t beat yourself up. You can’t win, but you just stay up and don’t get knocked down. If you can share the load, anyway you can, do. And find others who are going through what you are. Support sites – JDRF are wonderful. But also support groups online. But find your way, no one knows your child the way you do and (unfortunately) no other child will react to the condition the way yours does. Knowledge will make you feel like you have a shield when it comes to all this fighting.
What are your hopes/fears for the future?
My fear is losing him. Every night I get the same nightmare. I know that’s bleak but it’s the truth. And, of course, the day when he starts to treat himself is really worrying, even if that’s a way off. My hope is that we get the artificial pancreas available worldwide, and smart insulin and encapsulation. My real hope is that one day I won’t have to worry about his life being in danger 24 hours a day. It really is that simple. My wife loves him more than I thought it was possible to love anyone, my daughter worships him and my heart thunders just to say or even write his name. My hope is that he is one day free of type 1 and allowed to be everything I know he can and will be.