Thank you very much for visiting our page!
I am taking part in the Vätternrundan (http://www.vatternrundan.se), a 1 day 300km (186 miles) bike ride, held on the on 14th June 2013. The route will take us around the second largest lake in Sweden.
Along with the added bonus of being able to dress in lycra(!), we are all trying to raise as much money for a charity that is close to my heart.
In April of last year, my life along with my wife’s was turned upside down, when shortly after the birth of our gorgeous baby Ben, we were told he had been diagnosed with Cornelia de Lange, a rare genetic syndrome. We were keen to quickly find out what this meant for Ben and our future and learnt that the syndrome has both lifelong physical and mental disabilities and brings with it health complications too. Ben has the classic form of the syndrome and so far has all the typical characteristics including upper limb abnormalities - missing one finger on his left hand and a fused elbow with just a thumb on his right. He will also have quite severe development and physical disabilities and born at a low birth weight – will remain small throughout his life.
While this has all been very overwhelming and will continue to throw many challenges our way, Ben is a gorgeous and joyful baby. He has an amazing smile and a cheeky laugh and is adored by everyone who meets him!
The fundraising will help the Cornelia de Lange foundation which has provided so much support to us and Ben and other families alike. The CdLS Foundation promotes research into the causes and manifestations of the syndrome. They also support people affected by CdLS and their families through holding global conferences, family meetings, running a helpline and producing leaflets, newsletters and running a website (www.cdls.org.uk).
They are a small charity, run entirely by volunteers including parents and professionals. They do not receive any money from central government. The only money that they receive is through donations from family and friends of people affected by CdLS. Whilst we may not have all the answers now to guide Ben in the future, we at least know that we are heading in the right direction, with invaluable care from specialists and other families following a similar path to ours.
Thank you for taking the time to visit my page and a big thank you for helping support such a great charity!