It's me...Lilly's mom. I am finally getting x-mas cards out and would love to send one to anyone wanting one. Just email me your address...you can send it to our home email, if you wish. bjstiern5@bevcomm.net I made so many this year...better to have more then less, I guess. Thanks!!!
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.
hi my name is amanda and my 6 month old daughter pheobe has pffd in her left leg so im new at this whole thing and still in the first stage of everything. as a mom i am having trouble with blaming myself (even though her dr at vanderbilt childrens hospitol said not to) i would just like to talk with other moms or others with the conditions about the whole thing. i guess i just need a little support.
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.
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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.
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 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.
