If you are new to PFFD - I recommend starting with the PFFD book

Second lengthening SUCCESS!.... plus Story of first lengthening from old PFFDvsg site

Jonathan's story has been posted under "Florida" on the other PFFDvsg web site for a few years now and is reprinted below. We were very happy with the results from both lengthenings although it was not an easy process. Both lengthenings were done at Shriners Hospitals--the first in Tampa and second in Twin Cities.

The second lengthening is nearly complete. He only has to do rehab to regain his strength and range of motion. His leg is 3 inches longer than when we started. The really neat thing is that he no longer needs to wear a shoe lift! We did not have any complications to speak of this time.
The only thing that was harder for him was that he was older and in school this time so had to deal with all the looks and questions/comments from other kids. I strongly recommend doing an education session at your child's school to answer the questions from other kids so your child doesn't have to face them all alone.

Feel free to contact us if you have any questions or comments.

Read Jonathan's Story...

Baltimore Sun Article about Lengthening vs. Amputation

A must-read for anyone trying to make a decision:


It doesn't really show more options than just lengthening or amputation. But I suppose in order to feature all the choices and to throw everything into the mix, the article would have taken up too much space.

As for me and Adam, we certainly have no regrets. We never achieved "perfect". But we achieved happy, and that's a whole lot more than most people in this world do.

Happy to have PFFD

I am a 25 year old woman with PFFD and I couldn't be happier. Despite what scoiety calls a handicap, I have lived a normal existance so far. I am so inspired by the stories posted on this site, I was excited about sharing mine. So, here goes:

I was born the oldest of what would become a sibship of two. My sister, Kelly, was born 18 months after I entered this world. While my sister is "normal" and I am not, we were raised to know that we are both the just the same. I believe with all of my heart that children are a product of their environment and I contribute my acceptance and life successes to my very supportive, naturally talented mother and father.

Lengthening vs Outcomes ?

Are there any people out there who have had a lengthing and are now adults (25+ yrs)? How have things gone?

Our Daughter April 2003

Our daughter was born 5 months ago with PFFD in one leg (unilateral PFFD) as a class C or D Aitkens.

We had known ahead of time that she would be born with PFFD becuase we had discovered it during a routine ultrasound. The doctor who made the announcement was very discouraging, but that night we discovered the PFFD VSG as setup by Mike Malloy. It was more wonderful than words can describe. The stories there were uplifting, the people we contacted were very encouraging, and the information better than anything else we found. When our daughter was born we welcomed her into our lives fully with love, joy, and our hearts at ease.


FAQ (Frequently Asked Questions) for PFFD

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