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Personal Stories

Riding a Bike

I thought you'd like to see a video of my daughter riding her bike. We use an "extension prosthesis" - what some call an "prosthosis" or a "Moseley-type device." The ankle is hinged and it allows nearly full mobility which she uses when riding the bike. The small length of the pedal arm means that she can use her shorter femur to lever the pedal.

I need info

hi everyone my son shane is 1 year old when I was pregant with him they thought something might be wrong with his legs but when he was born nothing was said at 3 months I noticed he held his legs very weird and his feet and hips stayed turned out when I took him to the drs for his shots I asked them to check it out they didn't think anything was wrong I new different asked for a specialiest they sent me to an ortho at first they thought it might be hip dysplasia but after x-ray found out his his left femur was shorter then right dr said lets wait and see I know he is not as effected as so

My e-mail friend Julia

Hello everybody,

I want to share some more pictures of my e-mail friend Julia.

The pictures show that one can be a strong, confident and beautiful person in spit of having a handicap like PFFD

Regards, Steph.

Driving A Standard?

My PFFD affects only my left leg. Unfortunately though, I have no knee. Right now I'm about two inches short. Can anyone in a similar position drive a stick? If you can, is it overly difficult for you? How exactly do you do it? Thanks.

God knows i couldn't handle that

Having a child with a birthdefect has really opeded my eyes. Before I had my son I would say things like "I couldn't deal with something like that. (birth defect, mental contition,ect.) God knows that. Thats why he gave my two healthy children. (My first two)I wouldn't be able to handle it any other way. It takes a special person to deal with that" How silly of me! now I feel ashamed almost for thinking that way. I CAN and WILL deal with it. And that doesn't make me some unbelievably strong individual. It makes me a mother.

Bilateral PFFD correspondence

I am new to this site. I am a 64 year old married woman and because I have no computer, my niece is doing the handywork for me. I am hoping to find someone to correspond with who also has bilateral PFFD and who is close to my age to exchange ideas. I am so glad to have found this site and look forward to hearing from new friends. I also am here to tell all of those families with PFFD that one my age is still going strong and been blessed with an extremely happy and fulfilled life.

Song on youtube

My husband and I have a video on youtube. If you go to and do a search for 'Joseph Merrick', we're on the first page. You'll see little hands on a piano. We play under the name 'o my machine'.

13 month old with pffd in r leg from lower mid class family

If anyone has any information on resources for a child with pffd please let me know. My son had class c pffd that will require a new prosthetic each time he out grows one. He will also require surgery. We have been turned down for medicaid twice and are currently awaiting for word back from social security. We are looking into the shriners hospital. any suggestions?

The Shriners

I have to give many many many thanks to the Shriners... both in Greenvile and in Tampa, Florida (yes, you guys... Ron Gingras, Debbie, Danny, Fred... all of you). I grew up there and those people celebrated my every accomplishment. I remember when I was a little girl I brought my roller skates with me to the hospital and the staff stood outside while I skated around. In the hallways, everyone says hello. They really treated me like a was special there. It wasn't just that they made me legs... it was a whole experience.

Daniel Rigby's Steps - Two Feet on the Ground!

Thank you to everyone who sent us emails or left comments of support on Daniel's blog ( It really means a lot to us.

Today for the first time, Daniel experienced what it is like to have two feet on the ground! He tried on his first prosthesis which will be ready to take home at the beginning of September.


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