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Simone's daughter Coco was born with a rare genetic disorder in 2013 called Cornelia de Lange Syndrome. It is a rare disease and
effects individuals in different ways. 

Coco's life has been very difficult due to her health problems........a heart defect, gastro oesophageal reflux disease (GERD), urinary tract reflux, feeding problems, chronic bronchitis, speech and language delays and repeated respiratory tract infections.

Coco's short life has involved many hospital visits, stays and
surgical procedures.  Coco has a problem with the co-ordination of her
swallow which causes her to choke easily so in December 2014 she had a feeding tube fitted which enables us to fulfil all her nutritional needs by feeding her directly into her stomach.

We are taking part in the London to Brighton 100km challenge to raise money for the CdLS Foundation UK.

The CdLS Foundation UK has helped Simone's family to get valuable information about the syndrome. Through their conferences they have been able to meet other parents and children with CdLS and learn vital information from specialist doctors. In the UK the foundation is run entirely by volunteers.

"The CdLS Foundation exists to ensure early and accurate diagnosis of CdLS, promote research into the causes and manifestations of the syndrome and help people with a diagnosis of CdLS to make informed decisions throughout their lifetime."

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