Personal Stories

Tema is doing well

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:

Emma age 13 - off to climb Mt Kinabalu on Monday

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 Precious Kaiah

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!

My Son JJ

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

I need help with growth charts!!

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!

Hip Replacement... CRAZY

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

Doing fine at 32

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.

Julian is turning 3!!

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's Story

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.

Zachary

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?

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