You are here

Personal Stories

Looking for some advice from PFFD patients about foot amputation

I am a 28 year old guy with PFFD in my left leg. I haven't had any surgeries yet in my life for it. Because my foot is smaller, angled downwards and only has 3 toes, I've been able to wear a straight-legged prosthesis without anything "protruding" outwards. Basically, when wearing jeans, it looks pretty normal.

The problem I have is I can't sit in back-seats of cars, can't ride many roller coasters, can't sit in alot of theaters to watch movies, because my leg is always "straight". They couldn't put in an artificial knee, because with my foot, it is just too long, and the knee would be too low to be of much value.

Kalyn is trying to feed herself

Well I know that every parent thinks that their child is always the most beautiful and most inteligent child that there is out there but I have to say it about my little one. SHe is just starting to eat little bits of solid food recently and last night I turned my back for just a second and I could not believe that she picked up the spoon and tried feeding herself bec/ apparently I was not doing it fast enough for her. Check out her new picture.

Love,
Heather and Kalyn

I believe he has class b

Hi,
My grandson is 8 yrs. old.
He was born with pffd. He has been wearing a lift
for several yrs. now. Nothing stops him from doing
anything. Not even that big lift he wears.
When little Chris enters the room with his
big smile everyone focuses on him.
Iam not sure what my son wants to do
at this point.
Finances are a big problem.
Is there help out their for this kind of thing?
If anyonr knows some info let me know.
In the mean time I will enjoy watching this little boy smile from
ear to ear.

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.

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.

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.

PFFD in OHIO

My son Peter has unilateral PFFD left leg and we are scheduling the lengthening surgery. We are looking for other children near Columbus OH who have had surgery.

Pages

Subscribe to RSS - blogs