Thaxted care home will light up to raise awareness of rare disorder

Phillip stands holding his CdLS awareness sign

Phillip stands holding his CdLS awareness sign - Credit: Zero Three Care

Essex-based Zero Three Care will light up their homes to raise awareness of a rare developmental disorder.

Zero Three Care's Maranello Home in Thaxted is currently the home of a young man named Phillip who has Cornelia de Lange Syndrome (CdLS).

May 14 is CdLS Light Up day, and to mark the occasion every one of their 10 homes in Essex will light up the outside of their buildings purple.

Cornelia de Lange Syndrome is a genetic disorder that is present from birth though not usually inherited. It’s more commonly caused by an acquired change in one of seven genes important for development either at or shortly after conception.

The disorder causes a broad range of potential physical, cognitive and medical challenges and affects both genders equally and is seen in all races and ethnic backgrounds. It's estimated to occur in one in 10,000 births.

Phillip, and the staff team at Maranello are doing this in the hope to raise awareness and money for the charity that helps fund research for this syndrome, CdLS Foundation UK & Ireland.

Phillip's mother has opened a Just Giving page so people can donate online. The page has so far raised £475 of its £1,000 target.

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Alongside this, Phillip is also selling t-shirts for £7 which can be purchased by messaging Zero Three Care on their Facebook page.

The CdLS awareness shirt Phillip is selling

The CdLS awareness shirt Phillip is selling - Credit: Zero Three Care

If you want to get involved and have a significant building, landmark or monument near you, contact the owner and see if they’re interested in lighting up to help raise awareness.

The foundation would also like to make a mosaic of everyone who is taking part in raising awareness.

They would like those joining in on Light Up Day to make a sign that says #CdLSawareness and #CdLSmosaic, take a selfie with it, upload it to social media using the same hashtags on the sign and donate to and share the Just Giving page to your social media too.

If you’d like to donate to Phillip’s fundraiser, you can find it here: https://justgiving.com/fundraising/cdls2022

You can find updates on the buildings and landmarks taking part in the day on the CdLS Awareness Day Facebook page: www.facebook.com/groups/1199460367250433