Dead in Bed Syndrome

Thursday night I received some heartbreaking news. I found out that a 17 year old girl with type 1 diabetes died in her sleep due to the fact that her blood sugar dropped too low and it did not wake her up. I of course lost it and started crying. I don't know this girl or her family, but I can imagine what they are all going through. This is every parents worst nightmare. Every time I think about this I start to cry. As you can imagine it hit way too close to home for me. My baby girl is 15 and we know she has a deadly disease, but for the most part we try to keep the reality of this disease in the background so that we can deal with this disease 24/7. We get into a routine and sometimes get a little false sense of security when things are going well. Sadly when we hear something like this, it not only breaks our hearts, it makes us remember how deadly this disease is that is trying to kill our daughter. And at any moment that can be her! :-(

We have an amazing daughter and bless her heart, when she goes low at night she won't wake me up because she doesn't want to bother me. So she takes care of her correction on her own. I don't want her to ever be alone fighting this disease. Since she won't wake me up I have been setting my alarm all week to wake up a few times during the night to test her. Then I find out that this happened. Of course I am beyond paranoid right now! I do not want her to really know what happened because I don't want her to be worried. That is my job! But as she gets older it is harder and harder to shield her from the reality of this.


What happened to this young girl is often referred to as ‘dead in bed syndrome,’ and its cause is not known. However, it is responsible for approximately 6% of diabetes-related deaths in individuals age 40 or younger. The scariest part is that ‘dead in bed syndrome’ is not necessarily linked to poor blood sugar control, or extreme circumstances. In fact, in most cases the person appears to be perfectly fine the night before and goes to bed, but never wakes up.
Shanie asked me about this a few months ago and I tried to reassure her that she didn't have to worry about this. But how can I keep her from worrying about something that could really happen to her?


These are the moments when I absolutely 1000% positively HATE this disease! How do you protect your child from a monster that you can't see or stop? That is why I will NEVER EVER stop talking about this. If my baby girl has to fight this disease 24/7 than I will tell people about it 24/7!

PLEASE PLEASE understand how important it is for a cure! Seriously, this is a deadly disease!!