World Diabetes Day

So tomorrow is World Diabetes Day. I didn't know this until a few days ago. 24 days ago I barely knew anything about Type 1 Diabetes.

I knew a few people with type 1, I knew you needed injections and blood sugar tests, I knew you had to weigh some of your food - but that was about it. I thought the worst part of it was having to inject yourself several times a day but thought once you'd got past that it was probably an easy condition to have.

Now here I am, 24 days on, and boy was I wrong!

It seems our lovely boy, with his rare neurological conditions, just didn't consider himself unique enough! He took his complex rare diagnosis and he doubled it! Now, all of a sudden, he has two (relatively) rare complex medical conditions. Completely unrelated to each other. Really really bad luck.

It's still very early days and we have lots to learn and understand but we have learnt vast amounts in the last few weeks. Here's some things we've learnt about looking after a child with Type 1 so far...

William's insulin pump, attached to
him 24/7 via a small cannula.

• Many children discover they have Type 1 when they are admitted to hospital critically poorly with a condition called Diabetic Ketoacidosis. We were told William was maybe 48 hours from death on admission to hospital had we not sought help.
• Several times a day we administer insulin to William in varying amounts depending on different factors. Too much or too little insulin can be fatal if not managed correctly.
• Having a tube fed child makes managing type 1 easier!
• Having a non verbal child with minimal self awareness makes managing type 1 a lot harder! 
• There are some very clever people out there who have understood what diabetes is, invented some clever equipment to help manage it and work alongside patients to manage this condition.
• This is a condition that needs ongoing, daily management. You don't get given your dose of insulin and just get on with it. You have to manage it every day, all day.

William highlighting the warnings signs of Type 1. He wees in
a nappy, shows no indication of  thirst, has been putting on
weight excessively and only slept excessively for the 36 hours
before admission (which he can do for a number of reasons!),
but he never likes to do things by the book/poster!

24 days ago we had a boy with a complex medical condition and profound disabilities. Now we find ourselves in slightly uncharted territory. While Type 1 is much more common than Lissencephaly, it is very rare in children with pre-existing rare conditions! Our home carers and school TAs are doing amazingly at learning all this new stuff being thrown at them but our hospice care package is going to struggle. Now more than ever we need some overnight care out of the home for William and William needs consistent care from highly skilled people. Matching these two needs together is a bit tricky so our next step now is to work out what form of overnight care we can access which will provide William with what he needs.


We are still in something of a state of shock. Shocked that something else could happen to our boy, that we have somehow got to find the time and strength to manage something else, that this condition is so much more complex than I ever knew. Shocked that this isn't just a winter phase or a few weeks of extra work, but a part of him for the rest of his life.

That's enough now. No more complications, no more equipment, no more diagnoses, no more time consuming care routines. We've had our fill.