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£8,376.63
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Mike Keen avatar
Mike Keen

Mike's White Collar Boxing

Boxing for Skye Wellesley Foundation because these kids need our help

119 %
£8,376.63
raised of £7,000 target
by 86 supporters
Donate

Skye Wellesley Foundation

In June 2008 Skye Wellesley, aged one, was diagnosed with Rett Syndrome. Not being aware of the existence of this condition at the time, the horrific days and weeks that followed we, her family, discovered what it means to us and to about 2,000 other families in the UK. Rett Syndrome is caused by a sporadic genetic mutation on the MECP2 gene located on the X chromosome. This microscopic change in the structure of chromosomal proteins has an overwhelming impact on the life of the 1 girl in 15,000 statistically around the world. Most obviously, Rett chronically slows these girls neuro-development, very few Rett girls will ever speak and only half of them will walk. Behind the physical incapacity, there are also additional problems as Rett girls are prone to scoliosis, difficulties with digestion, epilepsy and fits of extreme anxiety. We set up the charity to fund research into finding a cure for Rett. There has been very significant progress towards that goal over the last four years and I'm pleased to say that Professor Adrian Bird at Edinburgh University is at the forefront. Research can be very focused as the gene, MEPC2, that causes Rett was pinpointed ten years ago. Finding a cure for Rett would bring so much happiness to many girls who are prisoners within their own bodies, plus it will help to find a cure for other genetically related disorders. Thank you

Charity Registration No. 1127939

Story

Thanks for visiting my page. A few years ago it was my pleasure to work with Chris Wellesley, whom many of you will know from his time in the City. Through getting to know him, I became aware of his incredible fundraising activities on behalf of his daughter Skye. Skye suffers from Rett's Syndrome, a rare genetic disorder which almost solely affects girls - if you'd like to know more then I urge you to read this mother's account: http://www.independent.co.uk/life-style/health-and-families/features/rett-syndrome-hannah-is-painfully-aware-of-her-limitations-8564928.html

In 2010 another close friend's son was diagnosed with Prader Willi Syndrome, another genetic disorder which will require much long-term support and care: http://www.pwsa.co.uk/index.php/what-is-pws

A key reason for me supporting these 2 causes is that continuing research does offer effective treatments and hope for a cure one day. And why am I boxing? I think the simple reason is the sheer number of people that would like to see me punched offers the greatest potential for fundraising....as many of you know boxing training is one of the hardest disciplines there is - I'm asking you to sponsor my efforts getting into the ring (there will literally be blood and sweat to add to the tears that have already been shed in the training) and to keep me focused. In case you want to see what one of these events looks like - here's the last one: {http://www.brawl.st/brawl-street-the-grange-hotel-highlights/}

The Macquarie Foundation have kindly agreed to match all donations so every £1 donated will mean £2 for these charities

thank you for your kind support.

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