Have you heard of Congenital Hyperinsulinism?! This very fact is exactly why I'm starting this page. Hopefully I will raise some much needed funds for research and helping families but most importantly some awareness for this nasty life changing disease of the pancreas.

My name is Gemma and I had a normal pregnancy at first then towards the end at 34 weeks I had to be admitted to hospital with a low lying placenta. I knew that it was more than that and dreamt that we would need to go to a special hospital... Mother’s instinct or what! I was very big for my dates and when baby decided to get stressed they eventually agreed to give me a c section 3 weeks early. On a lovely day in July 2013 gave birth to our beautiful boy Charlie. Who weighed a whooping 9lb 15 ounces. Considering I was three weeks early his size was of concern. Charlie was rushed to the neonatal intensive care unit. Charlie's blood sugars were very low and at that point he was put on glucose for a week but nothing helped so he was transferred to Great Ormond street. Every family's worst nightmare. After numerous tests and genetic blood tests Charlie was diagnosed with Congenital Hyperinsulinism.
Even with a diagnosis the road ahead was going to be tough. It's a rare condition affecting approximately 1 in 50000 babies and each one of those kids is unique in themselves. Many aren't as quickly diagnosed as Charlie either so in some respects we were lucky. These poor babies can’t tell us how they feel and when even trained medical staff have never heard of the condition, it is often passed off as another illness until the consequences are much more serious.
A "normal" person produces insulin and it helps them to regulate their blood sugar- something that is just done automatically and most people will never have to worry about it. With kids like Charlie, their bodies can’t regulate this process and in turn their bodies are flooded with insulin causing low blood sugar. Your blood sugar helps to feed your brain and other organs and when you have none- or levels that are dangerously low, supply can be cut to these places leaving the potential for serious damage to occur.
There aren’t a lot of options when it comes to helping these kids. I could go into so much more detail but here is probably not the place. Basically, there are 3 medications that are available, but not everyone responds to any of them and if they do they are left taking medication with some horrible side effects just to stay alive. If medication doesn't work then removing  95-98% of the pancreas is the only remaining option and then is still not a guaranteed cure. In fact, sometimes it can lead to even more complications or at the very least will make you become a diabetic sometime in the near future.
This condition leaves families with a constant battle. A battle against blood sugars. It may not sound that bad but its stress and worry 24/7 about trying to keep your kids safe from that permanent damage that can occur from the lows and Safe from seizures and other horrible consequences. Yes there is medication but that doesn’t always help. Blood sugar is not something you can see and just fix and it can be affected by so many things. Exercise, illness, growing, food to name just a few. Things that all of us do and most of us take for granted. Just the smallest cold can end some of these kids in hospital in a very serious condition. It means pricking your child for blood samples up to 10 or more times a day sometimes just so you can do your best to keep them safe.
If I can raise awareness  it may be the thing that saves a child one day, or gets a diagnosis quicker.
If you can spare anything, your donation will be greatly appreciated. If not, that is fine too but could I ask that you please share this page so that others will also finally know what Congenital Hyperinsulinism is :)