Thanks for taking the time to visit my JustGiving page.

It is over  twelve years since I last run a marathon and I haven't run anywhere close to that distance since having my daughter Anya in 2014 .It is because of Anya that I have accepted a place in London. During 2020, at the start of Lockdown,  Anya was diagnosed with a rare genetic condition called Cornelia de Lange Syndrome (CdLS)  I was told of the CdLS Foundation from the lovely genetics lady who diagnosed Anya. This charity has provided me with all the knowledge, but more importantly the support and network required when you have just found out that your child has a rare genetic syndrome.Cdls can affect many parts of the body. Individuals may display Physical, Cognitive and Behaviour characteristics. Some children may have limb abnormalities, problems feeding (reflex),issues with senses; hearing or sight. They may have anything from mild to severe intellectual disabilities.They may have specific difficulties with executive functions. The brain-based processess that control and regulate our behaviour. This may be social anxiety, repetitive behaviour. Also autistic spectrum disorders, communication and language problems and neurology problems to name some. Each child is different and it can vary hugely from one individual to the next, With early and the correct intervention some of these behaviour characterists can change over time.

Many health professionals have not heard of or have very limited knowledge and experience with CdLS children. I am hoping that running London marathon will not only increase peoples knowledge and awareness of CdLS but also raise money to keep a charity very close to my heart 💜 up and running. (Pardon the pun!🏃) Without donations this charity would not be here. I am extremely grateful to have gained the knowledge from the CdLS foundation, but most importantly the support and network it has provided. 

CdLS  is caused by a change in genetic material, called a mutation.The genetic causes of CdLS are complicated and research to fully understand all the genetic causes is still going on. 

The foundation provides a wealth of information. It runs conferences to educate but more importantly  support and provide a network for other parents to discuss, ask questions or share experiences. The foundation is a charity run organisation which relies on donations.