Today we hear from Grace, who is Mum to Alex, a little boy who was diagnosed with type 1 diabetes last summer aged 8 months.

Now thriving at 18 months old, we speak to Grace about Alex's diagnosis, and the diabetes technology they use every day.

Tell us about Alex’s diagnosis. How old was he when he started to get poorly? What were his symptoms? 

Alex was diagnosed on the 28th July 2022 at just 8 months old, A blessing in disguise, because he won't know any other way of life. He wasn't acting right for maybe 2 days before we ended up in A&E but looking back he was excessively tired for around a month before diagnosis.

The symptoms at his age weren't easy to spot, as he was in nappies and breastfed so I didn't notice the excessive drinking, I just put it down to a comfort thing. The excessive urination was evident in his nappy rash but again, that's just a baby thing. At diagnosis the doctor mentioned his breath smelling like pear drops, which at the time meant absolutely nothing to me but I now know it was the high levels of ketones causing the smell.

How was he diagnosed? 

We visited the GP the day before diagnosis because Alex had thrush in his mouth and a really bad nappy rash. I mentioned how he just wasn't acting himself, but the diabetes wasn't picked up on until we took him into A&E. I am forever grateful to the nurses and doctors there that day who, after the longest 5 hour wait of my life, had him diagnosed within the hour. His blood glucose on diagnosis was 38 along with ketones of 8. 

That whole time in A&E is a blur to me, I have no idea what was happening. All I know is my baby was hardly responsive, had an oxygen mask on at one point and he was hooked up to different machines, hell on earth for a parent to watch. 

What happened once you had a diagnosis? 

Once we were on the Children's Ward we met lots of fantastic doctors and nurses, I have no words to describe how each and every one of them calmed our nerves as much as they could and were so reassuring. The next day we met our Diabetes Team who absolutely bombarded us with information and made me cry loads, but they're fantastic people and we'd be nowhere without them. I remember them asking us what we knew about diabetes and I just sat there in silence, I had nothing to say, no knowledge whatsoever but they were so understanding and reassuring. They took us through the basics, with kiddie style with diagrams, so we knew what was actually happening inside of his body. He had a continuous glucose monitor fitted within the first 2 days on the ward and the insulin pump came on day 7. 

How did you feel whilst this was all going on?

Overwhelmed, anxious, confused, I could give you 100 emotions that went through me when the diagnosis came. 

Anger was a big emotion. For a while after diagnosis it was hard for me to believe that I hadn't somehow caused this to happen to my baby. He came from my body, fed exclusively from my body, it was a hard pill to swallow. Sadness of course, every parent has a dream for their children to live as easy and carefree as possible, this was an obstacle that was going to derail that dream, but that couldn't be further from the truth. 

My partner Rob, Alex's dad, had to leave us in the waiting room to get Mason home. I'll never forget the look on his face when he was finally allowed back in to see us, I can't imagine what was going on in his head, not being able to be there with us. 

How are you getting on now?

We have good and bad days but I now know that diabetes isn't going to stand in the way of anything he wants to do, he's already so brave and resilient. Every time we have to finger prick, change his cannula, fit a Dexcom, he reminds us of how amazing he is and if he can go through all this at his age he's going to do great things.

What does a typical day look like for Alex’s treatment?

Thankfully we have the amazing T-Slim pump which does all the work for us, we put in the carbs that he's going to eat with each meal/snack and it calculates and gives the insulin!

But of course he's 18 months old with an 3 and a half year old brother, there's the occasional sharing of snacks or sneaking food off peoples plates, trying to explain to Mason (his older brother) that he can't share his snacks with Alex has been a challenge!

I remember one time when Mason had given Alex his chocolate buttons, I asked Mason why he had given them to Alex and he said 'because he was hungry', that tugged at the heartstrings a bit!

But we ride the waves of the highs and lows, we do our best to keep him in range so the risks later on in life are lowered. 

Is there anything you’d like people to be aware of with diabetes?

Diabetes doesn't change you. It doesn't change what you can do in life. Our little boy eats the same, plays the same, acts the same as all the other kids his age, he just has some added extras. 

One of our biggest fears is that he'll go to school and be somewhat of an outcast, not invited to the same parties, not allowed to join in the games. If I can make everyone aware of one thing when it comes to diabetes it's that they're no different. 

Also don't be afraid to ask questions to parents with diabetic children, we want to help educate as many people as we can, no question is a stupid question! 

Alex awaiting a diagnosis in A&E

Alex wearing his Dexcom sensor

Thriving Alex now at 18-months old :)

A huge thank you to Grace for sharing Alex's story with us.