Welcome to this years Cdls Awareness Day, I’m Philips mum, Ginny

As well as being Philips mum
I am also a Trustee for the Foundation, which was formed over 35 years ago by
like minded families (including my dear late husband Steve) and professionals, in a quest to help and support our Cdls children and adults to reach their full potential

Philip has called Maranello
home for many years now and I have seen improvements in his behaviour, mainly due to staff thinking outside of the box re diet and activities in which he will engage in, music and dancing are his world and he has got some brilliant dance moves, he also has a delightful sense of humour and those beautiful brown eyes do sparkle

My only wish for Philip is that he continues to enjoy life on his terms, sadly the self injurious behaviours will always be there

The pandemic has meant that I
was unable to visit Philip, but with the support of staff and technology we have been able to keep in touch via WhatsApp and FaceTime, sometimes only briefly but I feel that it keeps the consistency going and helps with his anxiety issues

Thank you for supporting the
Foundation, my hope is that we will be able to continue the good work that we do for many years to come

Why are we raising awareness about CdLS?

Cornelia de Lange Syndrome is a rare genetic syndrome. There are four main
features in this syndrome. Children with CdLS are small at
birth and remain small compared
to children of the same age. They
are all slow learners but this
varies from mild to severe. Many
children have limb abnormalities
which range from extremely
small hands to complete absence
of forearms or digits. The most
striking feature of the syndrome is that all the children can
look alike, like brothers and sisters. People with CdLS can
often develop challenging behaviours.

What your awareness and donation support will do

The CdLS Foundation UK & Ireland is a family support
organisation which exists to ensure early and accurate
diagnosis of CdLS throughout the world, promoting research,
and enabling individuals, families, friends and professionals
make informed decisions and plan for the affected person’s
present and future.


All we are asking

Step 1. Grab a piece of paper and write #CdLSmosaic and #CdLSawareness on it

Step 2. Take a selfie with it

Step 3. Upload the photo to all of your social media using the #CdLSmosaic and #CdLSawareness

Step 4. Please donate 

Step 5. Share the just giving page to your social media 

Thanks for taking the time to visit my 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.