A father who tragically lost his daughter to a rare syndrome is arranging for landmarks across Colchester to be lit purple as part of an awareness campaign.

David Axtell, 61, from West Mersea lost his 13-year-old daughter, Jade, due to complications involved with Corneila de Lange syndrome (CdLS) in 2005.

Now working as a postman, Mr Axtell was pivotal in helping grow the CdLS Foundation in the UK and Ireland after he got involved with the organisation in 1992.

Although an unpaid volunteer, Mr Axtell dedicates huge amounts of his time chairing the CdLS Foundation UK and Ireland, as well as the World Federation of CdLS Support Groups.

Gazette: Delivering what matters – David Axtell balances his day job with countless volunteer hoursDelivering what matters – David Axtell balances his day job with countless volunteer hours

Named after Cornelia de Lange, a Dutch professor who identified the syndrome in 1933, CdLS causes children to have upper limb abnormalities, learning difficulties, and other medical issues.

Although it is not known exactly how common the syndrome is, it is believed to affect one in every 30,000 babies born, with around 500 children and adults with the syndrome in the UK and Ireland.

As part of International CdLS Awareness Day, which is taking place on Saturday, May 14, Colchester Castle, Colchester Town Hall, and the Mercury Theatre will be lit purple to raise awareness of the condition.

Mr Axtell explained the more people who know about CdLS and its symptoms, the easier it will be for it to be diagnosed, which helps sufferers with their quality of life.

He said: “Growing awareness in the general public is a really important factor.

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“You might have a cousin born with unusual facial features, but none of the medical team around this child might know what the actual causes are – doctors can’t know every single syndrome in the world.

“The more we can raise awareness of what it is and what it entails will allow for earlier treatment and diagnosis.”

Talking about his own experience, he added: “It’s not something you can plan for – it seems against nature that a child pre-deceases their parents.

“It was devastating, and so hard to deal with.

“You’ve worked so hard to give them the best quality of life possible and you still lose them - that was very, very hard.”