Blog: Every Mother’s Worst Nightmare

Our story: Hugo’s type 1 diagnosis and the impact to our family.

by Sally Morgan

Seeing your child suffering from a severe illness, and not being able to do a thing about it, is every mother’s worst nightmare.

Not really knowing what is happening, or what the symptoms mean, is equally as concerning. That was the experience I went through last year, when my son Hugo, then 7, was taken seriously ill.

In July last year, Steve, Hugo’s stepdad, and I were all set for a family holiday in Antigua. In the lead up to our trip, I began to notice a few small changes in Hugo’s health – nothing overwhelmingly alarming on its own – some weight loss, drinking a lot of water, frequent urination and generally being a little more lethargic than normal.

I made a mental note to book Hugo in at the doctor’s when we got back, but at the time felt many of those symptoms could be explained by the fact he was an active and growing young lad and that it was the end of the school year so he might be feeling tired. Given that we would soon be on holiday, I thought that perhaps he just needed some rest, recuperation and sunshine.

Surely it couldn’t be anything too serious?

Sadly Hugo fell very ill, very quickly after our arrival in Antigua. He was rushed straight to the emergency room of the nearest hospital, and was clearly very sick, deteriorating rapidly. There was a time when things were very serious, and that is when, as a mother, all those horrible feelings come to the surface.

Just what exactly is wrong with him?  What have we done wrong? Why didn’t we get him checked out when we were at home?

We both felt completely powerless as we sat in that hospital waiting, wondering and just hoping for good news.

People may think the medical care in Antigua might have been below the standards we are used to in the UK. But it was nothing of the sort – they were fantastic.

Very quickly they identified that Hugo suffered from type 1 diabetes, even more impressive when you consider it isn’t a condition that is common in Antigua. Knowing what was wrong meant they were able to stabilise his condition before he was flown back to the UK for further treatment.

And that is when we started to learn more about diabetes, what the disease is, and how best to manage living with it.

There are a lot of misunderstandings about diabetes. It is important to know the difference between type 1 and type 2 diabetes and to understand that type 1 diabetes is an auto-immune condition which can occur at any age but is most commonly diagnosed from infancy to the late 30s.

Type 1 diabetes sees the body’s insulin-producing cells killed off, and we all need insulin to allow the glucose in our bodies to enter our cells and provide us with energy.

Because that glucose can’t break into the cells, it remains in the bloodstream, which leads to needing to empty your bladder more often, thus in turn bringing about extreme thirst, when the condition is undiagnosed.

These were all the factors we had to learn, and learn quickly, following Hugo’s diagnosis which, as Steve notes: “has turned our lives upside down”.

It was all about educating ourselves, and Hugo, to try and manage the effect that diabetes would have on his body, and, with a seven-year-old boy who is only just starting on his journey and learning about life, that was quite a challenge.

Management of the condition started with daily injections to manage his insulin levels, as well as learning about the impact of carbohydrates in food and how these can impact your sugar levels. It was all very new to us and there have been many hours spent trying to understand how to manage Hugo’s insulin while trying to keep his life as normal as possible.

It was at this early point that we came into contact with JDRF and began to understand more about the fantastic work that it does in advising people how to manage and live with diabetes, alongside their continuing research to try and find the cure. It was also via JDRF that we first set eyes on Rufus the Bear.

Rufus is a fairly standard teddy bear with a difference – he has different coloured patches on his arms, legs, tummy and bottom which show children where to inject insulin and where to take their blood tests. Rufus was a huge help to us and a comfort to Hugo in those early days and weeks of injections.

Hugo has continued to improve, and has now been able to move away from daily injections to using an insulin pump, which allows him to control the gradual release of insulin into his body during the day. JDRF have been a fantastic source of support for all of us.

Through our work as Chairman and Trustee of the Steve Morgan Foundation, we’ve come to really value the work that JDRF is doing and fully support its ambition to improve the lives of people with type 1 diabetes. It is for this reason that we, together with the charity trustees, have chosen to donate £3 million to JDRF as together we seek to eradicate the condition.

JDRF is funding valuable and pioneering research around the world, including at both Cambridge and Birmingham Universities as they seek to help those affected to manage the illness. We recently had the opportunity to visit the professors and researchers conducting ground-breaking work in this sector.

With this substantial investment from the Steve Morgan Foundation, JDRF will be able to make further inroads into treatment and ultimately a cure, helping all the Hugos of this world.

A year after his diagnosis, Hugo is back to being the active and driven little boy that he was before he fell ill. For Steve and I, it is very important that Hugo continues to live a full and active life – we are never going to wrap him in cotton wool. Today, he continues to play rugby, go swimming and even skiing – things that most boys of his age all love to do.

Managing his condition, however, is relentless and requires our attention 365 days a year to monitor and control. Diabetes is one of the only illnesses where the medicine that helps keep you alive, has the potential to kill you too, so ensuring that we are always alert to the risks of too much or too little insulin is a daily challenge.

 

 

 

 

 

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