Thanks for taking the time to visit my JustGiving page.

My husband and I for our 30th birthday year have decided to jump out of a plane in headcorn on 14th April for our sons charity CDLS. Both our dives were bought for us so all donations will be going straight to CDLS Charity. Hers's our story.

In August 2008 , Our lives changed and was turned upside down, with  the birth of our gorgeous baby Ethan, shortly before Ethan was born I had a few compilcations.Ethan had stopped growing at 28 weeks and it was decided that they were to induce me. Ethan arrived safely in the world weighing just 3.2lbs He was very quickly taken to SCBU as he was very small and needing a little help. At first Ethan was considered just a premature baby, but then one doctor saw that there was more to it then that. He found indications that Ethan was more special then that. He had the mono brow, conjoined toes and a single crease across the palms of his hands, all signs pointed to Cornelia De Lange. To confirm this blood samples needed to be sent away for DNA analysis. Ethan had a NG tube fitted for feeding and we were then taught how to use. Ethan was finally released from hospital 6 weeks later. Then in November 2008 Ethan was diagnosed with Cornelia De Lange Syndrome CDLS. Ethan was very much on and out of hosptal in his first year of life. We were keen to quickly find out what this meant for Ethan and our future and learnt that the syndrome has both lifelong physical and mental disabilities and brings with it health complications too. Ethan has the classic form of the syndrome and so far has all the typical characteristics including upper limb abnormalities - his little fingers on both hands were fused. He will also have quite severe mental development and physical disabilities and born at a low birth weight he will remain small throughout his life. Ethan also suffers from hearing and sight difficultiesand therefore wears both hearing aids and glasses. Ethan is fed via a tube directly in to his tummy called a Gastrostomy. Ethan is unable to communicate and we use makaton for communication.

While this has all been very overwhelming and will continue to throw many challenges our way, Ethan is a gorgeous and joyful boy. 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 Ethan 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 Ethan 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!

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