Thanks for taking the time to visit the JustGiving page for Team Coco. Team Coco are:  John Pugh, Simone Pugh, Paul Bishop, Paul Cowley and Peter Mortimore

John and 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. 

The first 18 months of Coco's life have been difficult due to her health problems........a heart defect, gastro oesophageal reflux disease (GERD), urinary tract reflux, feeding problems 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 she had a feeding tube fitted which enables us to fulfil all her nutritional needs by feeding her directly into her stomach.

We're trying to raise money for CdLS Foundation UK.

The CdLS Foundation UK has helped us to get valuable information about the syndrome. Through their conferences we 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."

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.

We really appreciate any donation you are able to make. Thank you!

About CdLS 

It is estimated that between 1 in 10,000 - 25,000 people in the population have Cornelia de Lange syndrome.

Cornelia de Lange syndrome is caused by a single genetic change affecting a single gene in each individual.  However, the genetic change can be in different genes in different individuals.  

Research studies have suggested that most individuals with Cornelia de Lange syndrome had a severe to profound intellectual disability.  Some individuals with Cornelia de Lange syndrome have mild intellectual disabilities.

Some of the health difficulties in Cornelia de Lange syndrome may be particularly important for understanding behaviours that challenge.

Children and adults with Cornelia de Lange syndrome show higher levels of compulsive-like behaviours in comparison to other genetic syndromes.

While many children and adults meet the cut-off for Autism Spectrum Disorder (ASD) on standard assessments, the profile of ASD characteristics may be different in Cornelia de Lange syndrome.

Everyday living skills may be delayed among children with Cornelia de Lange syndrome but some do achieve a degree of independence in this area.

Between 50-60% of individuals with Cornelia de Lange syndrome engage in some form of self-injurious behaviour.

Overactivity seen in children and adults with Cornelia de Lange syndrome may be linked to pain and discomfort associated with gastro-intestinal difficulties.

(from http://www.findresources.co.uk/the-syndromes/cornelia-de-lange/key-facts)