If you are new to PFFD - I recommend starting with the PFFD book

My lovely 4 year old

My daughter was diagnosed at birth with what we thought was a femur fracture. She was not in pain and that made the doctors and surgeons wonder about thier diagnoses. It took us almost a year to finally get a definitive answer on what was really going on with Kayla. After three long drives to childrens hospitals the Shriners hospital in Kentucky told us the news. It felt great to finally be able to understand what was happening and not happening to my little girl. On the other hand I was completely devistated. How was she going to get through this and how was I going to be able to fully support her and make some of the hard decisions that the doctors said would await me in her future? I wondered and worried constantly if I had in somehow harmed her while in utero.


Since many of the articles referred to are on the internet, they may dissappear. This is an archive of some of them

Adult with PFFD wanting to say "Hello"

I'm really new to the boards, to be exact 2 hours and a few minutes. My name is Carmen, I'm 38 (okay--39 in October), Registerd Nurse (currently I'm a stay-at-home-mom), married, mother to two healthy beautiful children...and I have PFFD. I was one of the first (so I'm told) experimental Van Nes procedures to be EXTREMELY successful at the University of Kansas in 1969. I've been living a very happy, sucessful lif.e

I don't know if I can be of any help to anyone, but I would be willing to try to help answer any questions/concerns. I've always been open about my PFFD.

Oh, forgot to say, Right lower limb-complete abscence of femur and fibula. I also only have 4 toes!!!

New Prosthesis working fabulously

My daughter Amie has been using a prosthesis now for 8 months. SHe has adapted to it marvelously. She walks, jumps, runs, and tries to kick. As she grows adjustments are made to try and keep up with her. We are happy with her ability to be free with her prosthesis and without it. AT times it is difficult because it is sometimes the first thing people notice and comment on. But then she draws their attention away from her leg and to her face by saying "Hello" or smiling. She is amazing in every sense. I am constantly amazed at how quickly she can move and how nothing is too difficult for her.

Kalyn's New Swimming Pool

Hello everyone. I wanted to let you all know the good news that my husband and I just bought our first home and have been moving in for the last 2 weeks. I think the reason that I am most excited about this home and the reason that we pushed so hard to get it (even though the mortgage will kill us) is that it has a swimming pool for Kalyn. Shriners told us how good that water therapy will be for her legs. I have put her in it a few times and she still has that 5 month old baby reaction of throwing her arms in the air but she kicks her legs everytime that she is in it. She has been moving her left leg so much more latley. She has even now been able to grab both of her feet. Her legs are too short and she cant put them in her mouth but man oh man does she sure try to. She said her 1st word 2 days ago. Momma....Wooohooo. Man that made my entire day.


At our specialists request we have been doing rotating, straightening and stretching physical therapy. The therapist thought a little foot splint might be helpful as Cody's foot is bent. The Dr. says we can do it but it will never fix his foot. ???? Now after a month and a half of 3 times a day exercises the Dr. says it really will not help anything before surgery. Has anybody done pre surgery physical therapy? By pre surgery I mean 1-2 years beforehand. If you have done therapy- what kind of exercises? I know every case is different, just trying to get an idea of options for the therapist. This is her first pffd patient.

its all worth the 5 yrs wait...

As I promised I will keep everyone posted about kiara's surgery(lenghtening) to all the parents comments a Big THANK YOU... Kiara's leg has growned 5.5cm and the doctor gave her the okay for the pool this past week with a little help from the brace shop and we are traveling to Portugal for 2 weeks with her to see our Family to all good luck and I'll keep u all posted we will be back August 25th.

with care Sonia.

Emily's PFFD

Here is a couple of pictures of our baby girl and her leg. One of them is when she was born and the other is her 1 year old picture.

Emily's PFFD

My daughter has unilateral pffd in her right leg. We go for surgery in september where they will remove half of her foot and put a pin in her ankle to fuse her bones together. There are no families in my area that I know of who have a child with this condition and I am just looking for someone who can tell me more or who has been throgh what I have to go through.

Hello and Help

Hello and help . My son is two months old and has PFFD and FD.Our specialist and therapist are both with Children's Hospital in Denver. Our family is doing fairly well emotionally, but my head is swirling from the medical terminology. I also have lots of questions on care, specialists,therapy, what to expect the first years as he grows and some ideas on how to deal with the looks and questions from strangers. Due to my job I deal with the public alot and my children are with me most of the time. Any help will be greatly apprectiated and thank you in advance.


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