JORDAN'S STORY

A VERY special boy will be in the minds of five rowers as they complete the equivalent of the London Marathon in front of Western Road shoppers on April 16.

Their dry run will be raising essential funds.

Jordan Whitewood-Neal is nine. Parts of his cruelly twisted body are growing at an abnormal rate.

There is little that medical science can do for him for he has Proteus Syndrome, a rare but progressive condition.

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Talk to Jordan and he is dismissive of his problems. Watch him play football with his four year-old brother, Kai, and the extent of his disability - and his personal determination to overcome it - are readily apparent.

His is one of only 43 Proteus families in the UK.

His mother, Tracey, has been chairman of the Proteus Syndrome Foundation for seven years, battling for funds to help youngsters like Jordan and for a wider understanding of his condition and that of his fellow sufferers.

The movement's patron is the actor John Hurt, star of the film The Elephant Man, the story of Joseph Merrick whose advanced form of Proteus Syndrome earned him this cruel title in a less caring age.

Tracey and her husband, Dean, say that though the title is hurtful to many parents, the film has helped explain a little-known condition to a wider public.