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Shared experience

Caden lives with Down’s syndrome and type 1 and doesn’t let anything faze him

Meet four-year-old Caden, who lives with Down’s syndrome and type 1 as well as other physical conditions. His big sister Jamieleigh tells us all about life with Caden and how he teaches the family to appreciate beauty in everything.

A young boy with Down's syndrone sitting with Rufus, the bear with type 1 diabetes

Having Down’s syndrome means Caden deals with type 1 differently

All his life Caden has been poked and prodded for blood tests and healthcare checks, so he is used to it. This makes the finger pricks and tests that come with type 1 easier for him to deal with. Caden’s speech is delayed, so he can’t tell us when his changing blood glucose levels are making him feel funny. He also doesn’t show any symptoms when his glucose levels are high. He’s been through so much in his four years of life that he is incredibly good at masking when he’s not feeling well.

We don’t know where we’d be without a CGM

All this means we rely entirely on Caden’s type 1 technology to manage his diabetes. If he didn’t have his continuous glucose monitor (CGM), mam and I would have no clue if he was high or low. We don’t know where we’d be without it.

Caden’s insulin pump helps us limit hypos

Since birth, Caden had trouble swallowing and keeping food down. So, at 19 months, he had an operation called a gastrostomy, which means he gets fed through a feeding tube in his tummy. It takes a while for all the liquid to pass through the feeding tube. Having the insulin pump means we can deliver his insulin slowly during feeds to prevent hypos.

Caden’s feeding tube makes managing his type 1 easier

His diet hasn’t changed since being diagnosed with type 1 and Caden gets the same food each day. This is a relief because we don’t have to carb count. The feeding tube also lets us treat hypos more quickly and directly. Specialist doctors are still investigating the reasons for Caden’s feeding difficulties. This is ongoing and he has more appointments coming up. We would love Caden to experience food, but we know we will have a lot more to learn if he can.

We thought Caden having type 1 was just another blip

We didn’t realise how life-changing type 1 is, but we quickly had to accept it. Unless you live with type 1, you never fully understand it. It’s so hard to explain what it’s like. You can’t get ahead of type 1; you can only manage it the best you can.

I remember how scared I was

In those early days, I remember how scared I was each time I changed his CGM or insulin pump. I understand why people may be fearful of putting their trust in technology. Thankfully, as time went on it became easier.

Rufus came at the perfect moment

Caden was given Rufus the bear from JDRF in hospital when he was starting to feel a bit better. Rufus gave him comfort and helped him through those hard days in hospital. Caden really bonded with Rufus, and they became best friends instantly.

We have always been a little team

Managing Caden’s type 1 is no different. When we change his tech or do a finger prick test, Caden pretends to do it on Rufus – and then on us! He even presses the button to give himself insulin when it’s time. Caden knows his technology is important because it helps him. So, he accepts he has to wear it. He is so aware of how his little body works.

We deal with type 1 while having fun

Caden stops us getting upset because he never lets anything faze him. We think: if Caden can stay positive and appreciate the littlest of things, so can we. On his one-year diaversary, we will celebrate all things Caden and everything we have achieved as a family.

Everything he does is amazing because he has worked so hard to get there. He recently learnt how to jump after months of trying – we had the biggest celebration! The good times far outweigh the bad and the main thing we do is make memories and have fun.

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