Jordan suffers from Proteus syndrome

Problems started shortly after birth and Jordan had his first operation at 2 weeks old. We were told the birthmarks on his legs would probably fade. We did notice at a few weeks old that the fingers on his left hand seemed a little larger and that his arm seemed longer on that side. During his first two years of life, Jordan developed a fatty growth on his abdomen, his hand continued to outgrow the other and his legs started to deform. We saw various doctors who were puzzled by his condition. The first diagnosis at 2 years old was Klippel-Trénaunay syndrome, then Maffucci syndrome was mentioned. Eventually a UK doctor told us Jordan had Proteus syndrome. We were given no information on the condition but were comforted to hear that Jordan’s problems would not get any worse. How far from the truth that turned out to be!

Over the years Jordan has had countless operations, surgery to stop the growth in his fingers, plastic surgery to “debulk” them, countless leg operations to try and stop them growing crooked. Jordan’s spleen is very large and at risk of injury, he suffers from skin diseases and varicose veins. His spine has started to deform now and his neck is bent over to one side. During the summer of 2005 Jordan underwent three operations to insert staples in his knees. We will not know the success of these for another year.

Despite all this Jordan remains a bright, happy and humorous child, who enjoys life to the full. He amazes doctors with walking and even playing football. He loves sports and has even graded for his yellow belt in martial arts. He is in every other sense of the word a "normal" child.

Jordan update

To find out the latest on Jordan, please click HERE to read his blog.

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