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Personal Stories

Got a new prosthesis

Our daughter got her first prosthesis. It became obvious though that the person who designed this one was thinking of people who have amputations - not with people who have fully functional ankles/knees. This prosthesis, the prostheticist said, was desgined to remove weight off of the foot and transfer it to the skin/hip. Her first imaging showed a potential Class C Aitkins with a complete foot, ankle, and no hemimelia of the tibia - so we were a bit perplexed - but he said that's what is supposed to happen.

Alternatives to Illiazarov and Prostheses in the Treatment of PFFD?

My grandmother sent me an article in the New York Times which had some interesting new technologies. Both are designed with cancer patients in mind but I think they might benefit PFFD patients as well.

The first is a lattice made of biodegradable polymers infused with cells that have the capacity to turn into bone cells. Over time the scaffold degrades and is replaced by the patients own bone cells. Much of the research on it appears to be done at Rice University and the surgeries at Texas Medical Center. Some good web links are a general audience level lecture , some MIT class notes and a chemical engineering peer-reviewed article.

J's Story

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.


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