Name : Chip (Mother - Melvalina)

E-mail : 

Child: 14 years old

City, state:  Bedford, KY

Areas of body affected: Right foot, 3rd toe; whole right leg, hip and spine

Personal history:

My son was diagnosed with melorheostosis at the age of 4. He now is 14. We thought he had fractured his 3rd toe when the wood he was packing dropped on his foot. The toe was growing and sticking out, and then the 2nd toe started curving behind it. They operated on the 3rd toe and tried to pin it back, but it didn't work. It turned black at first and they were talking about taking it off. Thank God they didn't have to. When they took the pin out, the toe popped right back out. They said if the surgery didn't work it wouldn't get any worse. Well it did and now it includes his whole foot and all the way to his hip. They say they don't want to do more surgery until he stops growing, because if they do it now, they'll have to do it again, and they can't guarantee me anything. His leg is 2 in. shorter and 2 in. bigger around then his left leg.  His right ankle is contracted and turns sideways. He wears a brace and a 2 in lift, which he complains about rubbing and hurting, so he refuses to wear it. The dr. says in a year if his foot doesn't stop turning with the new brace he has to have surgery to try to correct it, but still no guarantees. He has to have hip replacement when he is older, along with possible bone stretching.  The doctor says she wants to operate on his good leg at the knee to stop growth so his right leg may grow to catch up with the left leg.  Well they did this surgery too along with trying to pin his toe back again.  The toe was Chip's decision.  I wasn't going to do it because no guarantees.   As you can see, it didn't work.  So what is a parent to do about decisions like these when they can't guarantee us anything.  It scares me to put him through this when all that may come out of it is more pain and the same shape if not worse then he is already in. Right now he can play just like any other child. He plays basketball and other sports. It hasn't slowed him down. The doctor says to let him play and do what he wants for as long as he can, so I do but with a lot of worry.  As stiff as his ankle is I'm afraid he will snap it.  So what are we to do with the decisions they leave us.  Now he is having back pain. I have applied for disability for him and will know something within 90 days.

Comments/Suggestions :  I am very glad to find this web site. It helps to know a little bit more about this crazy disease. I've been trying to find out more about this since my son was diagnosed with it at age 4 in 1992.  No one can tell me much about it. This helps a lot, knowing there are others we can relate to, and especially to you. You would be the only one who truly understands what my son is going through and what still lies ahead.  Your story really touched home because the exact same thing is happening to Chip. Thank you for your time.  I would like to here from you!  

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