This very fact is exactly why I have been sharing our journey in different ways the past few years.
With this fundraiser we will be aiming to MOVE in a fun way every day #rollingtowardsresearch
Hopefully not only can we raise some much needed funds for research and helping families, but most importantly some awareness for this rare and very serious conditon. A condition that can effect any family for no reason at all.
For those of you who don’t know us and our story here’s a little insight.
My name is Erin, I had a normal pregnancy and on a lovely day in July 2013 gave birth to our beautiful daughter Marlee. Things were going great but i did have some concerns which i voiced, but got told i was the usual worried first time mum and that everything was fine. I guess in most cases this is true but unfortunately, as it turns out, not this time.
People say that everything happens for a reason and whether good or bad it's one thing that i have truly come to believe throughout this journey so far. This time it was because before we could leave the hospital Marlee turned blue and had trouble breathing right in front of the nurse. If this had happened later we couldve been in the car and not noticed or been home and 40mins from the hospital.
She was raced to the nursery where she had a team of people suddenly working on her doing all sorts of things.
She was hypothermic and her blood sugar was dangerously low.
The next few weeks are a bit of a blur. So much emotion, sleep deprivation and fear. We were transferred from our local country hospital to a big one in the city after Marlee had some small seizures and our local hospital decided this situation was more than they were equipped to handle.
In the city Marlee was put in the Neonatal Intensive Care Unit while they continued to monitor her and try and figure out what it was that was continuing to cause her such problems. So many monitors and tests and just when we thought we were on the right track it was back to square one.
Then, one day there it was, a blood test taken at just the right time showed excessive amounts of insulin in Marlee's blood and she 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 are unique in themselves. Many aren't as quickly diagnosed as Marlee either. These poor babies cant tell us what is going on for them and when even trained medical staff have never heard of the condition, it is often passed off as another problem 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 Marlee, their bodies cant 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 arent a lot of options when it comes to helping these kids. I could go into so much more detail but here is proably 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 doesnt 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. Safe from seizures and other horrible consequences. Yes there is medication but that doesnt 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 get the word out 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 apprieciated. If not, that is fine too but could I ask that you please share this page and MOVE with us, take pics and videos and share it on social media with the hashtag #RollingTowardsResearch
Help spread the word so that others will also finally know what Congential Hyperinsulinism is :)
Please also check out this video if you have time and see where the money is going