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

Photos with peoples information

I've noticed over the months I've been a member that only myself and now one other person have put a photo with there information.
This website has the facility to do so, I think more members should use this as it would be nice to put a face to the person.
I even suggested to Mike a gallery on the website, but I don't know if that if possible.

What do you think?

Don't be shy, I'm sure your all great looking folk!

Dave Bailey

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

bent knee

Mallori has had her first lengthening. Her cast came off and her knee is bent and she can't straighten it on her own. She is having therapy every day.
Does anyone know of this happening to someone else? If so how did things come out? Can this too be fixed by Dr. Paley? Thanks Sybil[Mallori's meme]

A homemade DVD of McKenna's progress with PFFD

Hello from Minnesota!!!

We recently have finished making a 2 dvd set showing McKenna's progress being treated for PFFD. These disks are the 4th version of this documentary that we have been sending around the world to families looking for information about PFFD. Now since we are not movie making professionals they are not the greatest as far as visual quality, or editing, but they do show McKenna before any treatment was done, then they show her after her first couple of surgeries to fix the "Bend" in her thigh bone. Then we included a video of McKenna at a doctors convention about PFFD which shows her initial xrays and Dr. Paley giving a brief description of her plan for treatment. After that we finish up with an interview with McKenna and show her today, at 8 years of age, after her 2nd lengthening. We also included 2 documentaries that show the lengthening process. These were done by news companies and they do show other cases of lengthening that don't involve PFFD, but the information shown is very useful, so we left those in too.

PFFD: 

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.

Writing a book!!

Hi everybody!! I am planning on writing a children's book. I want to focus on children with PFFD, but also include children with other disabilities.

I will use photographs: couple of reasons, I can't draw and I think it's important to see children for how beautiful they really are!

My initial thinking is "favorite things to do." So many people focus on what someone with a disability CAN'T do...let's amaze everyone with what we/our children LOVE to do...

Feel free to email me with your child's fist name and age (or your name if you have pffd) and his/her favorite thing to do.

For instance: Sami, age 1, loves to climb on the kitchen table! This is something I didn't think she'd be able to do already!! I'm so naieve!! lol! I would include a picture of Sami on the table with her adorable mischeivious grin!!

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