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A story that gives me goose bumps

Our son Korbyn was born in 1999, and at the time we lived in Wyoming. Were the doctors are not the best. I went in for my 20 week ultrasound, and they didn't tell me anything other then i needed to go to Billings, Mt to get a 3-D ultrasound. So we did. They kept me over night in the hospital, not telling us anything. The next day I was discharged. But when we got to my uncles house there in Billings, the doctor himself called. He told us that he wanted us to come straight to his office for the findings on the ultrasound. When we got there. There were 6 doctors all sitting in a circle. They then went on to tell us that he would be a dwarf. They sent us to Denver for more testing. When we got there and the testing was all done. They told us he had no left leg. But that there was a foot not conected to anything. They also said it looked like he would still be a dwarf, but that there would probably be some mental illness. They thought at that time that we should termanate the pregnacy. We both said no. We went home, and found another doctor who had just moved to billings. He was a Perinatologist. He was amazing, so soft and sweet. He took us under his wing. By this time I was 27 weeks along. the doctor decided to do ultra sounds every day and tests almost every week. At 37 weeks, my Wonderful son was born he was 5lbs and 15 1/2 inches. But when I looked at him, I thought he isn't as bad as we expected him to be. He was alive and cring. They did all kinds of tests on him. And by late that afternoon he was in my arms. He had 2 toes on his left foot and it was turned backwards and his right foot had 4 toes and was turned to the side. At 3 months old I took him to the Shriners hospital in Salt Lake City. They told us he would never walk that he would be in a wheelchair all his life. We told them that we wouldn't accept that. I then took him to several different doctors. We ended up at the Spokane, Wa Shriners. they said we can do this and this and this. We said OK. At the age of 10 months his feet were amputated. we got his first wet of prostetics at the age of 15 months. It was a long hard road. 3 yrs later. He took his first steps without any help. Just out of the blue. It took our breath away. My husband and I were speachless... Since then he has had his Knee in his right leg taken out and the knee that was growing in his left hip removed. Now his has just gotten his first set of legs with the knees in them. And that was just 3 weeks ago. He is already walking again, without his walker. My son i do believe is a miracle. He has taught me so much. The most important thing he has taught us is to not take things for granted. We would love to hear from parents in the same situation as us. Our son is now in school, and I know soon he will start asking ?'s Maybe someone out their can give us some ideas on what to say. our e-mail address is


You are right, the story did give me goose bumps. I am a new mom of a girl, Eva, born with PFFD in her right leg. Her right leg is slightly shorter than her left (her right foot comes just above the ankle of the left). We had no idea until she was born since it was never detected on the ultrasound. We have decided to lengthen her leg and her doctor is Dr. Paley. The past 4 months I have been doing research and talking to parents who have gone through both lengthenings and amputations. I have even spoken to children who were born with PFFD and are now walking and leading normal lives - it has been absolutely uplifting. I think the most important thing is a positive attitude towards the whole thing. When he starts asking you why his legs are different that other children, be honest. Tell him that he was born with different legs but that does not make him any different that the other kids. Make sure he knows that he can do everything they can and that he is in fact probably a lot stronger for having gone through this. Assure him that he is wondeful and that his legs are wonderful. Another thing that I learned from the other children I spoke to was that their parents never made a big deal about it. They did not ignore the difference but they also did not focus on it. Also, pushing him to do everything and anything he wants will give him the confidence that he is in fact no different than anyone else.

These are just some suggestions from what I have learned. I hope they help. I know that before too long I will have to answer similar questions about constant hospital visits and shoe lifts. But I am confident that treating this as no big deal, just something that is the way it is, is the best way to deal with it.

Good Luck!!!!

The first day of school. There was a group of kids that swormed around korbyn and asked what was wrong with him. I let him ride to school with the neighbors because that is what he wanted to do. So him and the neighbor boy said nothing i jsut have faked legs. and they kept walking. And as far as making a big deal about him being this way. We treat him no different then we do our daughter. He is responsible for cleaning his room and picking up toys just like her.