Personal Stories

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.

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.

Ian Gabriel , our little angel and special child was born in September 19, 1999 , in a Clinic in the Philippines. Third child of a mother with late forty's, so how it turned his delivery to be in Cessarian Section. Never thought that were given a Special Child with Proximal Focal Femoral Dysplasia, Unilateral and without Stable Hip. We don't have any idea about this sickness. We didn't even know that this can have a solution someday. Ian can walk as a normal individual. Only at age seven years old he wore a prosthetic.

Noah, our son, is just over 2 months old and has been diagnosed with PFFD and fibular hemimelia. My husband and I were terrified to find out something was wrong with him the day he was born. After the appointment with the orthopedic, David and I are optimistic that Noah will be able to live a "normal" life. We have joined the site in hopes to connect with other families dealing with PFFD.

Encouragement, support, and love are what a child need when he feels different with other children.

1. WHAT MAKES ME DIFFERENT?

You are physically different because, one part of your body did not developed. Even you are born abnormal, God knows you can be strong and special that you will be a good example to people with different life too.

2. WHEN WILL MY LIFE BE NORMAL?

Hi everyone,

Can't believe I found this site. It's been so long now. My daughter was born w/ PFFD 23 years ago. She's had several lengthenings as well hip reconstruction twice to the right hip and also knee reconstruction, she's had an ACL added, yada, yada, yada.

She was one of Dupont's, Dr. Bowen, (whom we totally adore!) most difficult lengthening patients b/c her discrepancy was considered very big at that time. I believe it probably still is. She was lengthened 24 cm, if I remember correctly.

Hi everyone!

My daughter is 7 years old with bilateral PFFD, missing balls/sockets and knee caps with short asymetrical femurs. I've been off this site for many years due to the craziness of life and hate that I did. My daugther has had hip reconstruction on her left side and one leg lenthening so far. She was also born with Arnold Chiari, which she had decompressed and a seizure disorder. I have been looking at the blogs and find them so comforting and resourceful.