Thanks for taking the time to visit my JustGiving page.

My nephew Sonny Garner was born in July 2006 with a rare genetic disorder called Cornelia de Lange Syndrome (CdLS).  CdLS affects between one in 40,000 and one in 1000,000 live births (100 times rarer than having a child with Down's Syndrome)  This means there are about 300 people in the UK with the Syndrome.

There are four main features to CdLS.  Children with CdLS are small at birth and remain small compared to children of the same age.  They are all slow learners but this varies from mild to severe.  Most children have limb abnormalities which range from extremely small hands to complete absence of forearms.  The most striking feature of the syndrome is that all of the children are alike, like brothers and sisters.

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).  I know from experience that the families really appreciate the efforts that they make.

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.

Sonny is making great progress, especially since starting school.  He is adored by many people, and is the happiest six year old that I know.  He has a gorgeous smile, a wicked laugh, and brings a great deal of joy to our family.  He certainly lives up to his nickname "Sonny Sunshine".

When he was a couple of days old and we realised that he has CdLS, I promised my family that one day I would run the London marathon for him.  So.... nearly 7 years on it is time to fulfil my promise.  My training is going well, though it is not easy to get out of my warm cosy bed on a weekend morning to go pounding the streets with the great British weather! 

Please help me to make this worthwhile as every penny really does help.  For every donation made you can choose a track for me to upload onto my marathon playlist. That way I will think of you as I'm running on the big day......who knows, you may even help me to get through "the wall"!!!!!

Thank you x

 

 

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