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This year Freedom Fire & Security are taking part in the 2023 Lincoln Dragon Boat Race, to raise money for the CdLS Foundation UK & Ireland

Cornelia de Lange Syndrome (CdLS) is a rare genetic disorder affecting between one in 10,000 and one in 30,000 live births. The condition is caused by a random change in one of at least seven known genes. A member of the Freedom Fire & Security family (Miley, 10) was diagnosed with CdLS at the age of 2.

Affected people have multiple disabilities. All people with CdLS have learning difficulties ranging from moderate to profound. Many have physical disabilities that include growth problems, gastro-intestinal issues, seizures, cardiac, neurological and behavioural difficulties.

A large proportion of the children born with CdLS have limb defects or missing limbs.

The CdLS Foundation UK & Ireland is part of a World Federation, working to raise awareness of CdLS within the professions, and providing support for families of an affected person.