Hello,

First of all thank you for taking the time to visit my JustGiving page and hopefully sponsoring me for taking part this event. 

On the 18th September this year me and my best friend Heather (Charley's Mummy) will be taking part in the 5km 'Big Fun Run' in and raising money for Tuberous Sclerosis Association (TSA). 

This time last year I had never even heard of Tuberous Sclerosis Complex (TSC) and in some ways I wish I still hadn't. 

For those of you that know me well, you will already know why and who I am taking part in this event for..... 

My Beautiful God-Daughter, Charley-Marie was born on Tuesday 05th January this year. We knew she was a poorly baby before she was even born when doctors discovered a large tumour in her heart BUT what we didn't know was how much of a little fighter she would be. Because of the size of the tumour and where it was in her heart, the doctors said she wouldn't be here with us but she is here and for that, those that are blessed to know her are truly thankful. 

During the first few months of her life we didn’t know what exactly was wrong with Charley-Marie and it wasn’t until June of this year that she was diagnosed with TSC.   

For those of you who have never heard of TSC, it can cause tumours to grow anywhere in the body and they often grow in the developing brain of babies and children causing epilepsy, autism, attention problems and learning difficulties. It is a genetic condition, often affecting several members of one family. It can affect anyone and it often comes as a bolt from the blue. 70% of babies with Tuberous Sclerosis are born to families with no medical history of the disease.

As you can imagine, finding out yourself or a loved one has been diagnosed with TSC can have devastating effects. What is even more devastating is that there is currently no cure to this potentially life threatening disease.

My aim through doing this run is twofold, firstly to raise money which can be donated to TSA to help them to find a cure and secondly to raise awareness of TSC as you never know if or when it is going to affect yourself or a loved one.

Please spare a little time to look at the TSA webpage for more information; http://www.tuberous-sclerosis.org/ 

 

For more information on the 'BIG Fun Run' please take a look at; http://www.tuberous-sclerosis.org/publications/BigFunRuns2010.pdf

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