Jordan's tough decision

Instead 14 year old Jordan Whitewood-Neal is faced with the grim reality of having his leg amputated because he is in so much pain.

Jordan, who has Proteus Syndrome, has been undergoing tests at the Royal National Orthopaedic Hospital in Stanmore, Middlesex, since January.

He is waiting for the results before he finally makes up his mind but says he is "95 percent" sure he will go ahead.

"I try to think of the advantage and not the disadvantage of having it done," he said this week.

"I just think of the good side of it."

The amputation would be the right leg just above the knee and Jordan hopes if it is done during the summer holiday he won't miss too much schoolwork.

He was diagnosed with Proteus Syndrome when he was just two years old. It's a condition which causes overgrowth of body tissue, which can mean skin or muscles, but with Jordan it is mostly bones - particularly legs, hands, spine, ribs, and knees.

A pupil at Bexhill High school Jordan, of Watermill Close, has reached the point where his mobility is so affected that he barely walks now except when he is at home and feels he might get on better with a prosthetic limb.

He commented: "I have thought of this a couple of times before. I have been thinking of it for a couple of years. I think it has got to the point where it is time to do it now. I have said at other times maybe I can last one more year, or a few more months - but I don't think I will last another year."

Jordan will soon find out if he is to be given the go-ahead by his consultants and the amputation will go ahead.

His mother Tracey commented: "It has taken a long time because Jordan has so many complications. He's had a CAT scan, MRI, blood test, heart scan and so on, and the Conquest Hospital helps out by whatever tests they can do locally and sending the results up to Middlesex because it is such a long journey up there and back for us."

A bronchioscopy last year revealed indication of an obstruction in his throat and needed further investigation but now Jordan is waiting for the consultants' verdict before making his own decision and being admitted for a couple of days to find out about the procedure, where it will happen, and meet the team involved.

He commented: "I will probably ask my friends and people at school just to see what they think...but I know they will say its up to me.

"I am not really frightened of it. I have been assured by the doctors that it is not a dangerous operation. But I am a bit fed up with the pain now.

"It's not really about walking - it is not to walk easier, but it would be a plus if after the operation I could walk. They said there was a possibility I might not be able to use the prosthetic but anyway that's not the main reason I am doing it...It is the pain."

One of Jordan's family nicknames is Twiglet - called that because of his "knobbly" legs. To himself he occasionally refers to his legs and his stick as his "three Twigleteers" and admits he is "slightly" nervous at the thought of losing one of them, but added: "It's like a tripod you use for a camera. If one of those legs were broken it would be pointless. You can keep it, or just throw it away because it's no good."

To support Jordan go to www.proteus-syndrome.org.uk, and visit Jordanspages, or sponsor Tracey's friends from Bexhill Runners who are this weekend running the Luxembourge Marathon.