Hello - Thanks for taking the time to look at my page :)

My name is Charlie, I am nineteen years old and currently studying Media Production at University of South Wales.

I was diagnosed in 2007 with a connective tissue disorder called Marfan Syndrome and since then I have had 4 operations on my feet, which has left one foot with very little movement. In February 2012 I was then diagnosed with mild-root dilation (which means my aorta is slightly enlarged). This is something connected to Marfan Syndrome, and causes me to get tired and very cold.

In 2012 the way that I thought about my condition completely changed because of the British Heart Foundation, and the incredible people that I met there.

I attended a programme run by BHF, which supports teenagers who have a range of different heart conditions. Since then I have been lucky enough to participate in lots of events, everything from residential weekends away to theatre experiences. I have met a so many inspirational people, and through these events I've realised that it helped me gain the confidence I lost through each operation I had; which is something I never thought I'd get back.

In 2014, I became a case-study for BHF to help other teenagers who are diagnosed with heart conditions. The aim of this is to show that yes having a heart condition does come with daily struggles but there are things out there – like the BHF that offer a chance to many teenagers to feel like they have someone to relate to and not have to explain themselves.

I have always been interested in filming and creating videos, and in 2014 I worked with/collaborated with a Bristol singer/songwriter Dan Mur and my sisters, Roxana Haines (performer) and Jessica Haines (Artist) to raise awareness of heart conditions.

I recently realised that I am not happy with all of the uncertainties in my life, my heart defect being a big element of this. So my sister, for my Christmas present - offered me the gift of doing one little challenge each day (which I'll be starting as of the 19th of January)- to challenge myself and regain even just a little control in my day-to-day life. To find a little happiness. These ones are only little challenges, but still things I wouldn't usually do. They lead up to this big challenge I am taking part in the 5K Colour Run because for me, after all of my operations, this really is the ultimate challenge. The run will take place on the 17th of May 2015 in Bristol.

As you've probably guessed, I will be raising money for the British Heart Foundation as a thank you for the support I have received.

I want to raise more money by doing something that will not only challenge me but also something that will encourage me to get healthy and help a charity that has helped me and allow teenagers to experience what I have.

As a way of following my progress, you can see the little challenges I am doing every day - and the training I'm doing on my blog

http://charliescolourcrawl.blogspot.co.uk/ to get fitter and ready for the race. For me though, it's not about the time or even running the 5K. It's me accepting that this is something I CAN do - and hoping people might also believe in me and help me along the way.

My sister offered me the gift of a challenge, paying for my entrance into the 5K Colour Run - maybe you can help me towards my achieve my challenge of raising £150 for BHF?

Just donating £1 will make an enormous difference.

If you have a personal story about a heart condition that you'd like to share, post it on my blog, I'd love any inspiration you have to keep me going through these challenges and through the race itself. If you’d like me to run in the memory of someone, especially if they were a young person with a heart condition, I would be honoured to do it.

Thank you very much. :)