Rare Disease Day - 28th February 2015

3 Mile Swim to Raise Awareness & Funds for CMN & Caring Matters Now

Oliver on his 1st Birthday Photo sessionMy sister and I decided to take on a 3 mile swim to raise awareness and funds for CMN and Caring Matters Now. We trained for around 3 months starting with a very basic 20-30 length swim and growing this weekly until we were doing one full length swim amongst shorter ones each week for the last 2-3 weeks

The 3 mile swim is 192 lengths of a 25m swimming pool, it’s the boredom factor I think more than anything that you need to over come to get through this challenge.

We decided to support CMN when my son Oliver was born in November 2014 with what at the time was quite a shocking coloured section of skin across his entire back. We had no knowledge or understanding of it at the time and the nurses and doctors at the hospital were fairly vague as it is not something they see very often either.

All I remember thinking was what have we done wrong? My son does not seem to be perfect? Have we hurt him in some way? How did this happen?

With the support of Dr Kinsler and her team we have a much better understanding and after having a very early life MRI scan we have been told that everything looks good and I cannot tell you how much relief that bought to us as parents to hear.

With this in mind and knowing how rare / unusual it is to have CMN it became clear that funding will always be an issue as it will never be top of the financial support list when it affects the numbers it does. This saddens me and of course it will when one of your own is involved so it got me thinking about how we could do something to help raise what ever we can.

So 2015 saw us take the 3 mile swim challenge and we are currently working on idea for 2016 but we have decided that if it is possible to do 1 challenge a year without upsetting our great friends and family who all contributed then we will have a good crack at raising what we can.

We have had some of the best support from the team at Great Ormond Street and we hope what little we can do will help finance future work and research.

Adrian

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