Personal Stories

Emily is doing good. We just came back from Shriner's In Lexington KY. She was fitted a few weeks ago for a new leg and we went down to get it. She had to stay a couple of days to go through therapy because her new prosthesis has a knee and they wanted to help her learn how to control it. She is doing well with it. Sometimes it bends on accident but at least she wants to wear this one as to oppose to the straight one. I will keep everyone updated.

My child Nevaeh waas born with bilateral Pffd and I found out about her when i was 5 mths pregnant shes only 1 years old and I go threw alot with her. She was suppose to go threw a symes amputation in December but I canceled it because I felt emotionally not ready for me and her. Nevaeh moves around the house so good but my only problem is her club left foot bending so bad. Shes a darling little black girl with a big heart and always smiling, I dont know if her symes surgery will slow her down or make her progress better.

Hi, I am the father of a wonderful 4 year old. He has a diference of 6cm .he is due to go for his first surgery next tuesday. we pray everything goes well. Till about 4 months ago we attended regular physio .it was not really doing a lot for our son, so we went to our local herbalist . they gave our son a course of herbs and started a course of muscular repatterning.

What is Symes amputation? I had my toes removed at age 11. Is this what is means?

My wife (Deb) & I were told today that our unborn child has PFFD (due date is May 15, 2008). So far we know it's baby's right femur but don't know the classification yet. This website has been an outstanding source of information & everyone is so friendly + helpful.

I was born into this world with PFFD. I am unilateral and an above the knee left leg amputee. I was walking by 14 months in a prosthesis with out a knee, and then later I upgraded until I am now at the highest rated knee due to my athletics and busy life. I was very lucky because my parents treated my amputation and never made it seem as though I were any different. My dad pushed me into sports to keep my head above water, and to not think any differently about my situation.

Kiara Had a lenghtening surgery on March 31st, 2006, she had 11 pins put in her right leg and I lenghtened her leg 8 cm wich was the max we could do!

I believe I may be the oldest PFFD and that most of the original work was done on me at the Children’s Hospital , Boston (Brookline), MA (now known as the Children’s Medical Center) under Dr William T Green who was Chief Orthopedic Surgeon of the Children’s Hospital and full professor in Orthopedic surgery at Harvard Medical School. His pup and protégé was Dr David Grice.

I was diagnosed (in 1931) as, in those days, a Congenital Absence of the proximal 2/3 of the femur and acetabulum, acute (today known as a PFFD). There was a girl with a similar diagnosis but she died at age 12.

This is my first time with a blog so please take it easy on me if ya all could. I was looking for information if any one has had or is having back problems due to their disability and also if anyone’s fathers had been in the Viet Nam conflict. My dad has TypeII diabetes from Agent Orange exposure and from what I can find it looks like dioxin in the herbicide can cause a ton of birth problems. Thanks for any information and taking it easy on a new guy.
Thanks
Jeff