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Personal Stories

Tai's progress

Hi this is Brandy my husban and I had a baby in Oct 2004 with bi-lateral pffd. i just wanted to let everyone know that Tai is doing very well she is now 17mths and is walking around everywhere but still enjoys crawling around on her hands and feet. If anyone else has a child wiht bi-lateral or knows someone with bi-lateral we would love to talk to you about things. I hope all is well with everyone else take care.

Brandy and Brett Dubord

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 kevnlissa2001@yahoo.com

Experiencing PFFD

I was born with P.F.F.D, Aiken Type I, and coxa vera. After careful consideration my parents decided that they were not going to go ahead with an amputation which was suggested when I was a toddler.

I have had various surgeries including the following:

(2 years)- Valgus Osteotomy - right femur

(3 years)- Repeat Valgus Osteotomy - right femur due to loss of fixation

(9 years) - Left Distal Femoral Epiphyseodesis

(12 years) - Sutherland Double Innominate Osteotomy and Ileoposoas Recession

(13 years) - Ilizarov Leg Lengthening

(27 years) – Total Hip Replacement

My femur discrepancy was approximate 18 cm. I have a lift on my shoe, and have had surgeries including lengthening of my short leg and shortening of my long leg.

Adult Woman with PFFD

I am a 26 year old woman with PFFD. I am one of twins, and my twin brother was born with no abnormalities. I grew up a very normal life, and never let my condition rule my life. I received my first prosthesis when I was 1 years old. I have always been very active and received a new prosthesis about every year. I had my first and only surgery when I was 19 years old and that was a partial amputation. It was to allow my prosthesis to be more comfortable. I am now married and my husband and I are discussing starting a family. I would love to hear from other women with PFFD. I am nervous about possibly having children as I'm unsure if my hip could stand the extra weight. I just found this site today and I'm excited about hearing from others just like me!

Olivia’s prosthesis [pictures]

I have attached some pictures of Olivia and her prosthesis (the same one she got in October 2005). These pictures were taken on Jan. 5, 2006 when Olivia was about 19 months old. The first 2 pictures show her prosthesis. The 3rd picture shows her without her prosthesis. The other pictures show her wearing her prosthesis.

New Here

First of all let me start off by saying hi. My son Landon (2yrs old) has PFFD (class c). He is walking, runing climbing, doing everything any other child does. Right now his left leg is 4 inches shorter than his right(he uses a lift on his shoe), but as time passes that difference will become greater. He is also missing his fibula and the ankle causing him to have a club foot that cannot be corrected by surgrey. Along with this he is also missing his left arm above the elbow and his right arm below the elbow with 2 little fingers. However he does really well with what he has.

I am wrighting to ask for you imput. The doctors are now talking surgrey. Shriners wants to amputate his foot. The reason they gave me was because emotionally it will be better if he was younger when the amputation took place. I not sure if I can see there point. I guess I keep thinkin in my head that maybe five years from now a new procedure will be developed that may better help him. Besides it is my baby's foot (and I love it very much) He also has no hands so I don't see the point in taking a foot off that he uses. Has anyone had experience with amputation?

Mother of 12 year old PFFD

My daughter was born without her right thigh bone and only 1 of the 2 lower leg bones. At 8 months, she went through a Boyd amputation of the small deformed foot on her short right leg. She was fitted with her first prosthesis around her 1st birthday and started walking at about 22 months. She is active and has few if any limitations. We are currently going through physical therapy for the first time to smooth out her walk. Her therapist has instructed her to use a cane in order to assist her in learning how to walk correctly.

Website updated - now you can "attach" files with posts

I've added a module that allows members to upload images and documents as attachments to posts. Now when you go to create a post (Create Content, Blog Post) you will see at the bottom of the page a section called "attachments." There is a two meg limit on the size of all files and all images are limited to 640x480 in pixel dimentions. If that's not enough let me know.

I may also (if there is enough interest and I get a few seconds of time) add some more functionality that displays thumbnails of images in the posts as well.

I will be using this to post a document that shows some of th

Olivia’s prosthesis

Olivia finally got her prosthesis on Thursday, October 27th. (She was 16½ months old.) She didn’t like it. It didn’t hurt her … I made sure of that! But she just didn’t like it on her. Before she got her prosthesis, she was a pro at crawling and pulling herself up to standing. Now she would have to relearn those things all over again.

Help for international children with PFFD

My cosin is diagnost with PFFD type D. Right now he is 2 years old. He is from Bulgaria and he can't get help there. If somebody know a hospital that is working with international children please send me an e-mail at: maria.bg@hotmail.com
We already tryied in Shriners, but they have a policy for international children.

Here is the web site where you can find more information about the child (still working on it).

Thank you very much, Maria

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