When baby Jordan was born 11 years ago, Tracey Whitewood-Neal had no idea that she and husband Dean would have to travel a different route to other parents.

At the age of two their son, Jordan, was diagnosed with Proteus Syndrome. The condition is believed to have afflicted John Merrick whose life was made famous by the film The Elephant Man. It causes atypical growth of the bones, skin, head and other symptoms.

In the last nine years the family has worked to revolutionise the help available to others in the same situation.

They founded the Proteus Syndrome Foundation - a charity originally intended just to serve the UK. The organisation, whose patron is John Hurt who played the Elephant Man, now has members all over the world.

This year Tracey was awarded an MBE for chairing the foundation and for her professional job with the Child Support Agency.

Tracey, 41, said: "When we found out about Proteus, there was nothing at all. It was in the very early days of the internet. I didn't even have it."

She added: "Over the internet people can actually find you. You are not relying on putting posters up. The families keep trickling in. I can get them medical articles and put families in contact with each other. I have done for other people what I would have wanted. People know they can come to us for help and financial assistance."

Jordan has just turned 11. Because of Tracey's charity work, he has become something of a celebrity. After featuring on a TV documentary last year, he gets emails from children and adults all over the world.

Jordan met his football heroes, Jose Mourinho and Frank Lampard of Chelsea FC in December, 2004, after he won a Child of Courage award.

Historically the Proteus Syndrome Foundation raised £4,000 to £5,000 a year. Since the documentary last summer, it has raised about £12,000.

There is a separate Jordan's Fund that collects money for equipment for Jordan, such as his sports wheelchair.

The charity offers grants to pay for aids such as wheelchairs and shoes and for holidays. To donate to the charity or Jordan's Fund, become a friend or find out more, visit www.proteus-syndrome.org.uk , email tracy.whitewood_neal@virgin.net or write to 2 Watermill Close, Bexhill, East Sussex, TN39 5EJ.