Wednesday, 30 April 2014

Coco&Lily

Recently I have been in contact with a man called David from the USA, who is very passionate about changing the lives of people with diabetes in developing countries, who do not have access to insulin like most of us are fortunate enough to have. All of us affected by type one diabetes or who have it are very aware of the fact that insulin is what literally keeps type 1 diabetics alive. And David and his wife are also very aware of this, because he has been personally touched by type one diabetes, too. He has asked me to share their story and the passion behind their organisation: Coco&Lily, and just what it is.

Him and his wife have three children. Eva who is six, Lily who is  four and Cohen is two. Lily and Cohen have type one diabetes. They were diagnosed when they were around 15 months old. It has been a constant battle with their blood sugars ever since the day they were born and the fact that they are toddlers makes it even tougher! Lily is on an insulin pump and they are working on getting Cohen one too.

Type one diabetes is very tough on parents and those with it alike, even with adequate access to insulin. So it's hard to imagine just how tough it is for people in developing countries. Coco&Lily's aim is to help make type one diabetes a survivable illness for many families around the world, so that children can stop dying from type one diabetes.

"An opportunity to change the world through colouring books. Lets work together to ensure no child ever dies from type one diabetes"

Here are my thoughts on the matter:
One of the things that is stressed to many of us touched by this disease is that it is fatal if left untreated. And the simple, but sad truth is that in developing countries those who are diagnosed are effectively "left untreated". Mothers in developing countries are still tasting the urine of their children for glucose, something that that is far behind those of us who are fortunate enough to have access to treatment. Children are literally dying slow deaths from this disease; we are thankful for the fact that we have insulin and for every new day; these children are thankful for even just one more hour of their lives until this disease will eventually kill them.

I am and always have been since very soon after diagnosis, aware of how fortunate we are to have access to insulin; but knowing about the people in these third world countries makes me realise it even more. Every year we celebrate yet another year living with type one diabetes. Living. Children and adults diagnosed with type one diabetes don't get the chance to live with type one, as soon as they are diagnosed they start to die from type one; and that's not fair, it's really not fair when there are so many people all over the world who are fortunately, striving with this disease; it's not fair because this disease shouldn't be terminal any more in this day and age, but is is for some. It's sad that they have to die from a disease that they would survive if they just had access to the proper medical supplies and equipment? In developed countries it's talked about how type one diabetes used to be a terminal disease, how before insulin was discovered people would die from it within days or weeks of diagnosis, but what we don't quite realise is that even now, for many people in other parts of the world, it still is a terminal disease.

Insulin was developed over 90 years ago and in some countries is still unattainable, unaffordable or both.
More than 80% of diabetes related deaths occur in low and middle-income countries.

Something needs to change. 

And so that is why David and his wife created Coco&Lily. But Coco&Lily also works both ways, while they are very aware of the struggles in developing countries, they are also very aware of the struggle that children over here still face despite access to insulin...after all, in developed countries insulin isn't the only aspect of a life with type one diabetes, insulin is a treatment for the disease and we do our best to stay on top of managing it, but we also deal with what comes along with it, like the emotional and physical struggles. I still struggle with type one diabetes and I'm sixteen years old, so imagine what it is like for little children who don't even understand why what's happening to them is happening.

They feel the prick that comes along with blood sugar testing, they feel the sting of multiple insulin injections a day, they taste the chalky glucose tablets at 2am when their parents wake them up with a low...but they don't understand why. They don't understand why their parents have to poke them every single day. It is also tough and heartbreaking for the parents and so Coco&Lily can help both ways, it helps the children understand and  it also makes their parent's jobs a little easier; although having a child with type one diabetes is never going to be easy no matter how old the child is, but it provides comfort for the parents. Knowing that their child possibly won't be so distraught for the next cannula change or the next injection or blood sugar test. Sometimes it's the little things that make all the difference.

The books come as part of a kit and once the kits are created they will be for sale on the Coco&Lily website. Coco&Lily were able to partner with the International Diabetes Federation's programme 'Life for a Child',  and so those who have diabetes or have been touched by diabetes can purchase the kits, and for each one sold, the money goes towards a child's diabetes management for one month. David told me that they will also be making new products and building on the product line to make more and more of an impact.

Here is the link that is on the Coco&Lily twitter page.
https://www.indiegogo.com/projects/coco-lily-type-1-diabetes-education-for-kids

I know that this is an american organisation but I know this blog reaches out further than just the UK and I know that it is read by lots of people in america too. So yeah...although I may not be able to help so much with the actual fundraising I will try my best to help David and his wife spread the word about Coco&Lily and just in general help to raise more awareness, of the fact that people in developing countries don't have access to this vital insulin that will keep them alive.

You can follow David and his wife on twitter at @coco_and_lily

Thanks for reading:)

-Ellie


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