THE mum of a boy, who is the only person in Worcestershire to suffer from a rare genetic disorder, has organised a family day attracting fellow sufferers from around the world.

Felix Jones-Whale, aged eight, suffers from Phelan-McDermid Syndrome, a rare disorder which affects speech and language, cognitive development and mobility.

Mum Kelly said he was diagnosed when he was three and a half and she was shocked to discover there were no other families affected in the county, and only a handful in the rest of the country.

She helped found the charity PMSF UK so other families would not experience the same lack of information and support she faced.

She said: "When Felix was three there were only 70 people in the UK and Ireland with it.

"There's nobody else in Worcestershire.

"We needed to find information so I joined another lady and we became regional representatives and I am a founding trustee.

"We set up the charity to support the families.

"We've got a website, leaflets and now specialists who diagnose a child or adult with PMS have the information to hand to the families.

"They will never feel as alone."

Mrs Jones-Whale said her son was non-verbal, struggled to walk and had behavioural issues and would need 24-hour care all his life but said: "He's a beautiful, happy boy and everyone falls in love with him."

This year, the charity has enjoyed its third family day which saw 300 people come together, including 52 families affected by by Phelan-McDermid Syndrome from the UK, Ireland, France and the US.

Mrs Jones-Whale said: "This was the biggest one by far.

"We had families from five countries fly in. Because we are so rare it's important we all stick together.

"It was an amazing day and it couldn't have been done without PMSF UK and the support of all the families."

The day was held at Wyre Forest School in Kidderminster, where Felix goes to school, with Katy Phelan, PMSF founder, and Sue Lomas, PMSF president, flying in from the US.

Doctors, Eva Loth and Anna Riddell held a medical session and Sue Stokes ran a behavioural clinic for the families dealing with the rare genetic condition.

Families were also able to meet each other and talk about their experiences, which is essential as many don't know any one else affected by the syndrome. There are still only 160 people diagnosed with the disorder in the UK and Ireland.

The children were treated to face painting, arts and crafts sessions and sensory play at the event on Saturday, May 20.

Visitors also heard about the charity's #tell22for22 awareness campaign, a campaign to tell 22 new people about the syndrome.

The campaign is being launched to coincide with the third anniversary of the charity being founded this Saturday (June 10).