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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

Looking for others...

Hi! I am 27 and was born with PFFD. When I was young my knee was fused and my foot amputated. Today I wear a full lengh prothesis and get around just fine. Not much gets me down and I do pretty much what I want. I am currently engaged and loving life. I am interested in talking with others that have a true PFFD. Since it is rare, and living in a small town, I have never had the opperuntity to talk with others and compare notes. ALso, if you have any questions i'd be happy to answer them the best I can. I know my mom was scared when I was born as she had no idea what to do next, and there were no support groups at the time. Thank God for Shriner's Hospital, who took us in and fixed my up.

short stature

Is anyone else with PFFD short? I'm 29 & am only 4 ft tall, with my prosthesis.... I hear that my condition (with the short stature) is rare. Just curious.

Being able to walk, run, hop and scoot is all he cares about

Six years ago, I have never imagined having a child that would rip my heart off. All I wanted was to have another healthy sibling as my first one was growing with no one to play with. Joseph was born with fibular hemimelia, abnormal foot, abnormally deformed hand with ectrodactyly,and a congenital absence of his right lower extremity. I thought the whole world has turned around against us to deserve this. We took him wholeheartedly and promised to love him unconditionally despite with what he only has and we do not have regrets. He is the most promising child we would ever wanted. Bombarded with therapies since a month old, he never complained. More x-rays have confirmed that he is also a significant bilateral PFFD type D( no hip sockets developed). Dr. Jay from AI Dupont Children's Hospital in DE had the most promising conservative management of care that kept us going back for more future care. BJ, as we call Joseph, has a prosthesis that allows him to ambulate with his reverse walker and loftstrand crutches. He learned to walk,run and hop with his walker, kept up with his classmates, and amazed his therapist when he scooted down the ramp in the therapy clinic. He is a very active little boy with nothing else set in his mind that he can do everything his sister does.

I am an adult with PFFD with a daughter also affected

PFFD for me has been a lifelong journey of finding HOW and WHY not only for myself but for my affected daughter ( age 18 now) who has a more sever casse than mine and requires surgery NOW.

I had both hips replaced at age 44 but had conplications which caused me less mobility than before.

Want to receive comments from others with PFFD or children with PFFD.

Thank you,
Lillian

Olivia’s appt with Dr. Paley

Olivia had her appointment with Dr. Paley last week. This was the first time for us to personally meet him. His schedule was really tight and he was only able to meet with us for a short time, but overall we were very impressed with him.

Insurance

Does anyone have any experience with obtaining insurance to go to a leg lengthening center of choice or to Baltimore? Our insurance is an HMO and they will not let us go out of network or out of state(Dr. Paley). We have exhausted all options with trying to find different insurance, but since it is a preexisting condition we are having no luck. We may have to resort to my husband finding a different job, but with the economy the way it is we only want that as a last resort. Just wondering if anyone has any suggestions? Thank you.

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