Update:  To get fit for Mount Kilimanjaro and to help to reach my fundraising target, I completed the Liverpool 10k on Sunday 12th June in 1 hour and 3 seconds.  All sponsors are very much appreciated! xx 

 

Hello all my lovely family and friends,

I am going to climb Mount Kilimanjaro in October 2011 to help raise funds for Caring Matters Now Support Group, which supports children and adults with Congenital Melanocytic Neavus.

I have a large Congenital Melanocytic Naevus (CMN), which covers 80% of my body. CMN is a large, dark brown/black, hairy birthmark which covers areas of the body.

For the first 15 years of my life I was lead to believe that I was the only person to suffer with CMN and my parents and I were not even told what the condition was called! During the first 15 years of my life I underwent 30 plus operations, resulting in missing 3 years of school. The medical staff believed that the operations were necessary, as they did not know if the condition could be life threatening. I therefore undertook many types of surgery to remove the CMN including, excisions, dermabrasion and skin grafts. I guess you could say that I was treated like a guinea pig, as the doctors didn’t really know what kind of treatment would remove the CMN.

To cut my story short...

In 1996, when I was sixteen years old, I came into contact with Dr Atherton, the leading CMN skin specialist. The way in which I came into contact with DR Atherton, was a miracle itself. A Scottish newspaper was posted through a friend’s door in Liverpool and in the newspaper was an article about a new-born baby with the same condition as me and details of a CMN skin specialist based at Great Ormond Street Hospital. Who knows how that Scottish newspaper got to Liverpool?!?!

On meeting Dr Atherton, he was able to give me a name for my condition and tell me that there were actually other children, young people and adults with CMN. I and my parents couldn’t believe our ears, as I had come to terms with the fact that I was more than likely the only one with this particular skin problem. Dr Atherton asked if I would help support other sufferers of CMN and I agreed straight away, as I didn’t want others to go through the same difficult and isolating times as I did.

Since agreeing to help support others with CMN I have been in contact with over 250 CMN patients and their families. I established a nationwide support group for CMN sufferers and their families called Caring Matters Now (CMN) in 2000. The support group holds family days throughout the year in different parts of the country. The support group has also established 14 regional support groups dotted around the UK, which enables CMN sufferers and their families to develop friendships within their home areas.

The CMN support group raises £30,000 each year to fund the CMN medical research at Great Ormond Street Hospital. The funds pay DR Veronica Kinsler to research into CMN. Dr Kinsler has already discovered many medical facts about CMN.  All donations raised from the climb will go towards supporting the CMN medical research and the CMN support group.

To find out more please go to www.caringmattersnow.co.uk

If you can, please help!

THANK YOU! x

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