Thanks for taking the time to visit. 

We have set this fundraising page up to help support the CDLS UK foundation. Cornelia de Lange Syndrome (CDLS) is a rare genetic disorder - so rare that many medical professionals are not familiar with the condition or its symptoms.

Our daughter Jaiya was recently 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 understand CDLS better and the management of it, we recently went to a CDLS UK conference which was an invaluable learning experience for us.  It allowed us to meet other parents who have a child with CDLS - some with the more severe form of the syndrome. From this conference it was highlighted how we can help our child and others by bringing awareness of CDLS to those around us. 

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 GIVE GENEROUSLY AND GOD BLESS XX