The dress uniting children with rare disorder

A little green dress has been uniting children from around the world who have a rare disorder.

It has visited more than 100 families of those affected by CDKL5 deficiency disorder (CDD) in countries like Norway, Denmark and the United States.

Verity, of Coseley, near Wolverhampton, is the 92nd person to wear the dress, which she wore to celebrate her fifth birthday.

"Seeing all the other children wearing the same dress is really lovely because it makes us all into a community," her mum Sarah said.

The project, which she discovered through a Whatsapp group chat, has helped her feel included with other families affected by the condition, she added.

A little green bow tie also features in the initiative so boys that are affected by the disorder can be included.

"It's that connection with the community as it can feel quite isolating."

CDD is a genetic disorder defined by seizures beginning in infancy.

The Epilepsy Foundation said one in 60,000 people could be affected by the condition.

Verity was about nine months old when she was diagnosed with CDD after she had her first seizure when she was three months old.

Her mum has documented Verity's journey on Facebook to share updates with what she gets up to.

"It's about raising the profile of disabled people because I don't think they really get seen," she said.

Carol-Anne set up the little green dress project in 2011 to unite the small, international group of people that were affected by the disorder.

She is the co-founder of a charity called CDKL5 UK, that aims to support families and carers along with raising money to fund research into the condition.

The dress, which was once her daughter's, has been passed on to other families along with a journal that includes stories from different children, a teddy bear and pictures of each child with the dress.

"People can get really emotional when they see [the box]. It's a really personal, heartfelt thing," she said.

Carol-Anne's daughter, Amber, was diagnosed with CDD just before her fourth birthday.

She wore the green dress when she met Queen Elizabeth II as part of the Diamond Jubilee Tour in Yeovil.

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