Personal Stories

My son isaiah was born on April 14th. He was 5 weeks early but he is doing great. He was born with unilateral pffd. He is completely absent his left femur, nor does he have a knee. I don't believe that lengthing in going to be an option. He is going for his evaluation at Shrinners in Chicago on July 13th. My hope is for Van Ness rotation and hip reconstruction. Then amputate the toes making the ankle a knee. Then Isaiah will be able to wear a prothsetic from knee down. I am open to any suggestions, ideas, feedback, ect. Thank you for anything you might have to say.

My daughter, Casey, is two months old and has unilateral PFFD, class D. She has a foot, tibia and fibula. We are just beginning her treatment odyssey and would love to hear physician recommendations. So far our "home" orthopedic surgeon is Dr. Fitch at Duke. He has a wonderful pediatric reputation and is VERY well respected at Duke. In addition, we will be going to Shriners Hospital in Greenville, SC next week. We would like to see two other doctors before we begin her treatment path. I don't believe that lengthening is an option for Casey.

Hi my name is John. I'm 24 years old, married and the father of a beautiful baby girl. I have severe PFFD. I was born with only my tibia and foot. No femur, knee, or fibia, or even a hip joint. Just a tibia connected at my hip with tendons and muscles. My foot was amputated when I was three and my heel turned to the bottom of my tibia. I wear a prosthetic leg, with the C-Leg knee. Growing up I was always as active as any other little boy. My mother helped me stretch my stump every night so my tendons would stay loose.

I have had quit a bit of lengthening done and during the last one, my knee dislocated. Has anyone had this happen? The doctors were able to put my knee back into place but over time it's slid backwards again. I'm too old to see my doctor at Shriners that have done all of my surgeries, and every doctor I've gone to since doesn't really know what to do with me. I can't get a knee replacement or anything. Anyone had this problem??

My name's Jessy and I'm 21. I have PFFD in my right leg and I wear a brace, and use crutches. Until I was 7 I wore an extension Prosthesis. Then I had my first lengthening. I just remember my knee being stuck bent for 6 months mostly (because the muscles were so tight), and I spent a lot of the time in the hospital doing physical therapy. I don't remember exactly how much length I got each time I wore the Ilizarov, but my mom told me that altogether I've gotten 13 inches from the 4 lengthenings I've had.

Emily had her surgery back in September of last year. It took about three hours and everything went great. She was in a cast until October. She was fitted for her first leg at the beginning of November and recieved it on November 31st. She goes to physical therapy every week and are awaiting the arrival of her send prosthesis. I will try to keep everyone updated and if anyone needs to talk just contact me.

My name is Emily Guerra. I live in the Atlanta, GA area with my husband, Reinaldo and son Julian. Julian is now 13 months and is growing faster than a weed and finally walking around some. He will be walking on his own soon. He is our only child for the moment and we are thrilled that he is here with us.

ME AND MY WIFE ARE LOOKING FOR A NEW PLACE TO HAVE LIFTS ADDED ONTO MY DAUGHTERS SHOE IN LANCASTER PA OR NEAR LANCASTER SHE HAS ABOUT A 4 1/2 DIFFERANCE AND WE NEED TO FIND A GOOD RELYABLE PERSON TO ASSIT US IN OUR SEARCH. PLEASE CONTACT US

Havent updated in a while on my son Romie, he is doing great, He's three and a half now and is the sunshine of my life. His right femur is about 3 and a half inches shorter than his left which is a larger difference than before, but with his condition this is to be expected. Romie is in pre school now and has been learning so much, his teachers tell me that he is a joy to have in the class, he loves to dance and sing and finger paint with his friends and his favorite teacher Ms Emily.

My son who is 4 and 1/2 months old was born with missing fibula bone.we are still in the boat of deciding what is good for him...all the doc's we have seen so far has said amputation is better because the difference is too huge between two legs and his ankle bones are absent.
I am also visiting Dr hezenberg next month to discuss about his opinion on limb lengthning.
meanwhile on my research regarding amputation,I came to know about the Phantom pain,but do the kids who get the legs amputated at age of 12 = 16 months also have that pain...