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£3,389.26
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Simone Pugh avatar
Simone Pugh

Slick Chicks 100km challenge - 27th May 2017

We are partaking in a 100km trek to raise money for CdLS Foundation UK because the charity needs to raise awareness and funds

169 %
£3,389.26
raised of £2,000 target
by 77 supporters
Donate
  • Team members: Simone Pugh, Caroline Parrott, Stef Parkinson, Sally Ure
  • Event: London to Brighton Challenge 2017, 27 May 2017 to 28 May 2017

CdLS Foundation UK

The CdLS Foundation exists to ensure early and accurate diagnosis of Cornelia de Lange Syndrome ; 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

Charity Registration No. 1054033

Story

Thanks for taking the time to visit our JustGiving page. 

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."

Thanks for taking the time to visit our JustGiving page.

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.

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