Phil's story: riding for my young son with diabetes

• 8 year old son Seth was diagnosed with Type 1 diabetes in February 2018.
• They have no family history of diabetes and they knew little about the condition.
• Seth has since got to grips with his condition and is incredibly brave.
• He now uses an insulin pump and Dexcom CGM. They have helped keep his blood sugar more stable and given him some independence.

Diagnosis 

The 28th February 2018 was the day our lives changed forever and our healthy, happy 6 year old was diagnosed with type 1 diabetes. We never expected anything like this to happen to us, it came out of nowhere.

There were two weeks of Seth drinking a lot and going to the loo a lot. And then he was in the Child Assesment Unit in hospital having blood test and drips inserted. And then we were told “your son has an incurable and life threatening condition”.

It was a massive shock to us. It was the heartbreaking sight of your child in hospital that neither my wife nor I will ever forget. But we had so many questions – why our son? Is this our fault? Have we caused this? 

We're foster carers and we had our foster baby at the hospital with us so my wife Michelle and the baby came home and I stayed with Seth.

Going home

Some kids are in hospital for two weeks, But Seth was in for just two nights and back at school within a week. We wanted to get him home. We always try to make the diabetes a very normal thing, just part of life, that’s how we deal with it. 

The hospital were brilliant, but they bombarded us with information with what we were going to have to do – things like carb counting and background insulin rates. It was quite daunting. It’s bad enough injecting someone and coming to terms with that. 

As we had no history with diabetes, we didn't know much about it. The Diabetes UK website information for parents was really really good, which is why we wanted to fundraise: things like how to inject and what it means to be the parent of a child with diabetes were really helpful. It was quite soothing and made us feel we weren’t on our own. And it was helpful to known that diabetes is usually manageable and treatable.

Our type 1 hero

We managed a lot in getting used to new things but most of all we’ve seen a very brave little boy who has taken on his condition and never lets it get him down. He is our T1 hero.

Our son is a keen rugby player. One of my most vivid memories from his diagnosis were his tears when he thought he heard the doctor say he couldn’t play rugby anymore. But now he's taking life in his stride, playing rugby, tennis and swimming - and cycling.

Like our son I play and also coach rugby and it was Neil a fellow rugby player who suggested we do Ride London 100, as his grandmother had lived with type 2 diabetes. It was great, for two reasons: it keeps two aging players fit over the summer and it raises money for Diabetes UK.

A year ago, Seth went on an insulin pump. To him it means he can go to his friends’ houses for tea without us having to be there or rely on other adults. It’s given him so much more freedom and he’s got really good control of his blood sugar.

Peace of mind

Seth’s also using a Dexom CGM which has taken a lot of our worry away. It beeps and wakes you up if he has a bad overnight hypo. It means you get to sleep better as a parent. Before he had it, we would have to go and finger prick him in his sleep just to make sure he’s OK. You do have that horrible thought that he might not be. Which is dreadful.

With both the pump and the Dexcom, Seth’s HBA1C has stabilised to around the 50 mark. We have much more control and no longer see the variation in his blood sugar.  

We left the decision to use technology up to Seth, as it would mean he has two things attached to him that people would see say when he goes swimming. But he’s not embarrassed at all and doesn’t try and cover it up.

I hadn't cycled since I was much younger, so I borrowed a road bike so Neil and I could set out for our first ride. We managed 16 miles (with a 20 minute coffee stop thrown in), it was very flat but we very proud of ourselves.

I love the freedom of cycling - it gets you out in places that are really quite near to you, but could be a million miles away. Places you'd never drive to or places you'd never go.

I wanted to raise money for Diabetes UK to continue the amazing support and research to find a cure for this horrible condition.

People need to know there are different types of diabetes

It took a long time for some family to understand that what Seth eats hasn’t caused his condition. People need to know there are different types and despite what the media says, no one deserves to have this awful condition nor should it be taken lightly. 

Seth loved all of RideLondon down to the Diabetes UK blue hair. He sees it as making diabetes normal. And something to feel proud of. They did a dressing up day recently at school – and Seth went in as a diabetic in a Diabetes UK t-shirt.

He might say something like “I wish I didn’t have this,” if it comes to an extra slice of cake but then as I tell him, that’s not good for any of us.

The very best bit of RideLondon was seeing my family at the end and my son giving me a Superman key ring he had bought that day – “this is you Daddy."

Phil's tips for beginner cyclists - or returners:

• Do what’s comfortable – don’t worry about times, distance or speed.
• Make sure you always have plenty of water and always take a snack
• Get a cycling bib – not fashionable but a lifesaver