Personal Stories

Julian

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 update

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.

Ruairi

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 ?

Kayla

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's Update

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.

Morgan's Story: South Africa

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.

Free shoes for with lift on right shoe

I have quite a few pairs of gently used shoes that I hate to throw away if someone can use them. A few of them look as if they have never been worn. I have dress and gym shoes. The sizes I have range from 9 to 1.5 with lifts from 2cm to 5.5 cm on the right. If anyone has a little girl who wears a lift on their right shoe and could use any of my daughter's shoes. I would love to give them to you. As long as your child needs the lift on the right side, just let me know her shoes size and cm for the lift. I will send them to whoever can use them.

little man shane

Hey all been since Aug. since I posted last shane has started to walk thank the lord kicks his longer right leg out to the side a bit but walking great!!!! Went to the Ortho today DR. said the word ampatee I lost it shane is15 months old he has a shorter left leg right now 4cm but Dr. seems to think it will be much worse as he gets older said shoe life not an opption and might be able to lengther one leg and shorten the other but not sure if that would help or hurt how do they know at 15 month how much longer or shorter his leg will be by the time he stops growing????

Emma age 12 - looking for penpal

Emma was born in 1996 and is coming up13 years old. She has a twin brother Zac. Emma has PFFD in her left leg and we found out about her condition at the first scan at 15 weeks.

Emma has had no surgeries and wears an extension prosthesis. We met often with a number of specialists during the first 6 years of her life, including Ian Torrode in Melbourne (Van Ness Rotation), Dror Paley USA (lengthening) via letters/xrays from our orthopaedic surgeon in New Zealand who had worked with Dr Paley in the US.

nour

Nour, my daughter is now 4 years and two months old. she is walking fine but a very visible limb. the doctors say since she is walking to leave her alone right now and wait for another six months and then get an x-ray and see how things go from there. I wish I knew some one here in Ga that could share their story with me. some times i feel alone because I do not personally know anyone that has a kid like me or has gone through this.

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