Fun day for proteus syndrome sufferer Billy (From Echo)

Fun day for proteus syndrome sufferer Billy

12:30pm Tuesday 24th August 2010 in

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A mother whose son suffers from a rare genetic disorder is raising money to support research into his condition.

Billy Corcoran, 18, is one of just 40 people in the UK with proteus syndrome, an affliction which causes overgrowth of the limbs and organs on one side of the body.

Despite his normal appearance, Billy has a large left leg, which is swollen to almost twice the size of his right.

The leg is covered in blood clots below the surface of his skin, which can swell up to the size of golf balls if bumped.

In the 19th century, Joseph Merrick, who was known as the Elephant Man, suffered with proteus syndrome.

Mum Kathy Corcoran, 44, said: “It doesn’t affect his face and if he’s fully dressed and wearing loose trousers you wouldn’t know anything was wrong with him.”

“He doesn’t like talking about it. As far as he is concerned, he’s a normal teenager.

“But it restricts him a lot. He gets tired very easily and spends a lot of time at home, when most kids his age are out having fun.”

The condition is the result of a genetic malfunction, but little is known about it.

Now Kathy, of Triton Way, Thundersley, is organising a fun day to raise money for the Proteus Family Network, a group which funds research into the condition and organises events where families can get together and support one another.

The fun day is this Saturday and starts at noon, with a charity football match between the White Hart Pub and the Royal Mail, at Thundersley Primary School.

The game will include a penalty shoot-out competition for mums and kids.

After the game, the White Hart Pub, in Hart Road, Thundersley, will be opening its garden, where there will be games and activities, including face painting and a bouncy castle, followed by a raffle and live bands in the evening.

Kathy, whose son was born with the disease, urged people to attend the event.

She added: “Because people know so little about it, it’s difficult for Billy to know what his life will be like in the future.”