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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.

UK Adult with Bilateral PFFD also no left arm from the elbow

My name is David Bailey and I was born on June 14th 1976.
I was a premature baby weighing just 2 lbs 5 oz's!
It was obvious from birth that I had congenital deformities bilaterally, 3 toes on my right foot, and 4 on my left foot, and my right leg slightly shorter than left. I was also born with only 1/2 my left arm.
I was put up for adoption from birth, as my biological mother was only 16, and had kept the pregnancy secret from her parents and I think my biological father, and with my disabilities and no parental support from either set of grandparents, she thought that would be best for me.

Our little star

My husband James and I have a little girl called Jessica. She is 22months old and has Bilateral PFFD. She appears to have a rare type as she is missing several bones and the precise anatomy of her legs is currently unknown. She is missing the fibula but has feet but no ankle joint and is missing her little toes. She either has a tiny femur and tibias or a hip joint and femur. There is currently confusion about this.

Despite all this she is very mobile and gets around on her hands and feet - bear style. Her latest trick is to lift her body weight on her hands and flip herself over onto her back-effectively doing somersaults. It scares me silly but she thinks it's hilarious!! Nothing stops her and she has a will of iron. Is this a common trate? :)

Our Beautiful Olivia

Olivia was born on June 11, 2004. We learned at my routine ultrasound while I was pregnant with Olivia that she would be born with a short left leg. Her left leg is about half the length of her right. Her left foot is at about the same level as her right knee. I don’t know the classification yet, but she has a short femur and fibular hemimelia.

We met with 3 pediatric orthopedic surgeons before choosing Dr. Herzenberg and Dr. Paley in Baltimore.

Johanna - our daughter with bilateral PFFD

Hi! Johanna is now 5 years old. She has bilateral PFFD, also complicated by a foot which turns outwards and no right hand. Johanna is not walking. We are very keen to hear from any and every other children or adults with bilateral PFFD. We have lots of questions about treatments, what we can expect etc.
Please get in touch!

lewang@nznet.gen.nz

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