Personal Stories

We recently adopted a 15 year old with phocomelia of UE and PFFD. Yesterday was our first appointment with an orthopedic surgeon to discuss the options we have for our daughter at this point. She hopes to continue with leg lengthening procedures despite her hip most likely needing reconstruction and her knee without ligaments. Her foot is fully functional even though her left leg it is 6-8 inches shorter than her right. She also has scoliosis that causes her pelvis to turn.

Hi my name is Yesenia, I am on here because I want to see what people have accomplied or done to make them walk better. I been learning lightly alot these days about my condition, never really wondered or cared sadly. I just learned not to learn ago that I have PFFD, when I was about 1 1/2 year old I was amputeed on my left foot so that they can make a stump out of it. I wear a Prosthesis. I've been seeing alot of doctors trying to see if there is any chance that either a total hip or artificial hip could be done. I tell you it is tough even in how the economy is right now.

Hello all we have had no hope with ortho Drs or shriners

first they said it was nothing maybe a shoe lift and thats it then he is going to be feet shorter on left side and amputation only option then shriners said it will be 5/ 6 inchs shorter on left side and amputation was the way to go but then they sent report to Ortho and primary Dr that says it is estamited at 3 inches shorter so fed up with stuff going crazy!!!!!

Further to my post a few days ago, Emma SMS me earlier today and said 'yes I made it'. So how's that to be standing at the top of Mt Kinabalu, age 13 with PFFD and a prosthetic leg with your school mates! Yes I do know that there are a number of disabled mountain climbers with prosthesis ... but when it is your own child born that very special day not so long ago, and you've really wondered (and worried) about their lives, and the opportunities they will get (or you think they will have to fore-go when they were born), it is still pretty darn neat to hear her say 'yes I made it'.

My son Tema was born with PFFD on the left leg. Prosthesis is only one way at present. Our first and second prosthesises were made in Germany by Dr. Nader and Spoerer.

This is the first:

Mt Kinabalu is the highest mountain in South East Asia and is situated in beautiful Borneo a 2.5 hour flight from Singapore.

Emma, her twin brother Zach and a group of 20+ sports leaders from Tanjong Katong Primary School in Singapore are to set off on Monday to climb the mountain. Emma has one extra bag than the other kids - a spare prosthesis in case her main one breaks.

My nine month old daughter Kaiah was born with unilateral pffd of the left leg. I have gotten more information about her condition by doing research over the internet than I've gotten from the doctors. We are so scared and terrified of the word amputation which is the only option Shriners has given us (although we've gotten two other opinions locally here in Richmond Virginia that lengthening is very possible). Right now the difference in her legs is one and a half inches estimated at full maturity to be six inches. We just want what is best for her to have a healthy life!

I have this wonderful son born with PFFD. We have been treated at Sinai Hospital in Baltimore at first by Dr. Paly and later by Dr. Standard. We now need another surgery but my insurance company bailed on us. Does anyone know where I could possibly turn for assistance. I have some money saved up but it is nothing compared to the cost of the surgery.

Thanks Tamica

My family Dr. and pediatrtian are trying to figure out the best way to track Brooke's growth and weight. She is a bilateral, so I am in the hunt for...or how other bilaterals, have been measured and weighed......HELP!

It's been a while since I've written anything.... busy with work, kids, and art.