My husband James and I have a little girl called Jessica. She is 22months old and has Bilateral PFFD. She appears to have a rare type as she is missing several bones and the precise anatomy of her legs is currently unknown. She is missing the fibula but has feet but no ankle joint and is missing her little toes. She either has a tiny femur and tibias or a hip joint and femur. There is currently confusion about this.
Despite all this she is very mobile and gets around on her hands and feet - bear style. Her latest trick is to lift her body weight on her hands and flip herself over onto her back-effectively doing somersaults. It scares me silly but she thinks it's hilarious!! Nothing stops her and she has a will of iron. Is this a common trate? :)
We are now at the stage of making decisions about treatment options for her. At the moment our options are:
* Fit prosthesis without surgery - but they will be bulky and more difficult to fit with her feet in the way.
* To have symes amputation of the feet and fit prothesis. However we are unsure of the stability of her hips.
Is there anyone else in he UK who has this condition and knows doctors who may be experienced? We have been seen by many doctors over the past two years and are now trying to find some consistancy with a team in Birmingham.
Also, is there anyone who can advise us on amputation. When this was first discussed it was devistating and we still struggle with it. We are beginning to accept that this will be the way forward but when you are in the situation it's really hard but we're still smiling :)
Hope to hear from some of you,
Jo
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Comments
Not quite PFFD - but a good story
Another option is to do nothing. This person didn't have PFFD - but the story is inspiring about how with no prosthesis or amputations this person is thriving (Kyle Maynard)
http://www.usatoday.com/life/2004-11-17-cover-wrestler_x.htm
Jessica
I wish you all the strength possible in your decisions regarding Jessica. I also have a little girl with bilateral PFFD. When Brooke was a infant she would get around army style, like dragging herself with her arms. When she got older she did the bear walk, on all fours. Now she walks with a lift. Our children are amazing. They adapt to the way they were made. You will be even more amazed in the years to come. There is a purpose, our children will help us as much as we help them. Brooke has trouble with walking, but exceeds with a scooter. Since her right leg is shorter than the left the scooter works wonderful. She puts her shorter leg on the scooter platform and away she goes. She rides it better then any of her friends. Like I said, they will amaze you. God's little gift. I wish your family all the best. JoAnn