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Personal Stories

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.

My Special Son and our Little Angel

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.

Our boy with PFFD

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.

QUESTIONS ASK BY MY SON 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?

My girl - Nickie

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.

New to this site

Hi everyone!

Hello 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.

Alena Grace

We are new to this sight, and very happy to have found it, we are in the process of adopting Alena, she has severe bilateral PFFD. She has no hips femurs or knees. She has had surgery to correct bilateral club feet, and had surgery to fuse a partial knee tht was in the hip area. She uses an electric wheel chair for school and outings, can stand, but walking is very difficult, she is very heavy set, runs around on all fours, has the cutest skip, and stands on her head.

I'm new

My sister told me I should check out this site because I was born with BPFFD. I am 31 and a wife and mother of two beautiful children. Here is my story. I was born in 1977 with this birth defect that the Doctor attributed to a morning sickness medication that my mother took while pregnant. My femur bones are very short, and I am missing the ball of my right femur. I am 4 feet nine inches!I have never had any surgeries because my only options were the lengthening or the amputation of my feet just to make me taller.

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