We have crazily decided to run half a marathon for a very worthy foundation the CDLS UK foundation. Cornelia de Lange Syndrome (CDLS) is a rare genetic disorder - so rare that some of the medical professionals we meet are not familiar with the condition or its symptoms.
Our daughter Jaiya was diagnosed with CDLS. Our cheeky, fun-loving JJ does not have the classic form of the syndrome, which for some children means physical disabilities, inability to speak, severe learning difficulties etc, but the condition does mean it has an impact on her learning and development.
To help us support our daughter better we regularly attend a CDLS UK conference which is invaluable for us and the other families who attend. The foundation also has a network of professionals who advise and research however most of the fundraising for the foundation is done by families who are personally affected by CDLS.
So this is our chance to do our part. Since that conference our family and friends have been pooling all efforts together to raise awareness and raise money to support the CDLS foundation, which provides invaluable support and research.
PLEASE SUPPORT AND GOD BLESS XX
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