Name : Johnny (Glenda, mother)

E-mail :

Child:  12 years old

City, State:  Philadelphia, PA

Areas affected:  right foot

Personal History:

He was diagnosed in 2002 with melorheostosis.  I had noticed his foot wasn't growing, it was 3 sizes smaller then his left foot.  I told his doctor and she sent him to a podiatrist.  That was where they told me about his disease.  He got surgery done soon after that.  That was the most painful surgery I think I have seen, it lasted 8 hours.  He was in such pain that I would cry just seeing him suffer. He was in a cast for 3 months.  After his scars had healed he was unable to walk well and he was in constant pain.  He was in physical therapy for a year.  He gave up the therapy because it was painful.  Now he walks  just a little straight but he feels pain all the time.  His foot is not growing like the doctor said it would.  He hates his foot because it's deformed.  Sometimes I think I made the wrong decision by letting him have the surgery. He's only twelve now and he likes sports and he gets mad that he can't play sports.


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