Personal Stories

I really do not know much at all about PFFD other than that my girlfriend has been trying to figure out why i am the way I am and discovered PFFD. I was born 3 months premature to an insulin dependent diabetic 17 yr old mother in 1977. I had cleft palate deformity and problems with my lungs and no thighs. i am not sure if they knew about the thighs at the time due to all of my other problems. Both of my parents, being teenagers did not want to be saddled with me and split up within a year of my birth leaving me with my wonderful grandparents. I did not leave a hospital for 3 months.

His birthday is in March and he is growing into such a little boy!!! Active as anything and is constantly telling me to "Check it out!" Whatever "it" is...

Igor is a 15 year old Russian boy born with PFFD. He came to America in 2007 to have his left foot amputated. He had the surgery at Shriner's hospital in Greenville, SC. He was then fitted with a prosthesis.

He is small - around 4 feet tall, but nothing holds him back! He just signed up to play baseball with the local homeschool league. We play racquetball several times a week and he is getting really good. He plays football, basketball, any kind of sport really.

My son Zachary was born with PFFD. He has just under an inch difference with his right leg. I am seeing an orthopedic doctor close to where I live but an concerned that he has not seen enough of this to really help him. I have contact Dr. Paley but now he is moving to Florida and well that is quite far for me. Does anyone know of any doctors in the Jersey area that might specialize in this? I will go to Chop. They did a wonderful job on my daughter's capular hymangeoma. Also should I be concerned that he is almost 9 months old and not crawling?

My son Julian is 8 months old and was born with pffd of the right leg. He sees Dr. Davidson at CHOPS in Philadelphia. Julian had xrays done at hershey medical center and we found out that he doesnt have a kneecap, or a joint in his hip, i think it's called asatablum? his right leg is about 4 inches shorter than the left. So lengthning may be a option but not sure because of the hip, most likely amputation. Im really worried and upset about everything, im 27 years old and this is my first child. does anyone have any encouraging advice? Please.

Olivia had her first lengthening in May 2008. Her surgeon is Dr. Davidson at Children’s Hospital in Philadelphia (CHOP). After gaining 1.5 inches of length, Olivia developed a knee contracture. Lengthening was stopped at that time. She now wears a 3 inch shoe lift. Even though I would have loved for Olivia to gain 3 inches, it all worked out fine. Olivia was able to get her fixator removed just before she started her first day of school. It made her transition to full-day, 5 day/week preschool all that much easier. She thrives at school and all the kids and teachers love her.

Hi
This is ruairi's mum ruairi was born in 2000 with PFFD and to date has had no surgery , wears a extension prothesis and we are discussing with his doctor the van ness procedure. We would like some information on this from anyone ?

My daughter Kayla was born with her right leg missing just above her knee. We were told it was ABS(amniotic band syndrome) but after the MRI they said it was pffd. i would love to talk to others about pffd and how they are dealing with it.

Noah was seen at the Shriner's Hospital in Greenville, SC in November. The doctors there are wonderful, they truly made me feel at ease with the decision to amputate. My husband and I are chosing amputation over lengthening more for the quality of life that we want Noah to have. Leg lengthening is said to be a hard process for any child to endure and the possibility of having to amputate as an end result is high. I understand my son could keep his own leg and look "normal" however Im confident that the sooner we amputate the sooner he can begin living his life as any child would.

Hello to everybody, my name is Charne' Gardiner.
Firstly, I would like to thank you all so much for keeping me sane, educated and in (reasonably) good spirirts over the last few years. I have been comforted by your positive attitudes and experiences through many sleepless nights in front of this screen.

My daughter Morgan was born in August 2005 with unilateral PFFD class B/C.