Personal Stories

Hi my name is anna mccallum-reid i'm from auckland, new zealand and i was born with pffd in the right leg i don't auctually know what catogory i fall in to though. i was also born with conjoined fingers on my left hand which only has 3 fingers including the thumb, and had open heart surgury at 10 months old i don't auctually know if its related to the pffd or not.

Hello. I was just curious if anyone knows the cause of PFFD? Any information would be very helpful!!
Thanks, Tara

Hi everyone.
Just a quick update as to what's happening with our little
boy Matteo.
We saw Dr Brown at BC Children's Hospital in Vancouver last week and
also spoke with several children/families that are going thru leg lengthening procedures. That's one of the options that we had on our plate prior to the appointment. The other was amputation of both feet (Symes?). With the amount of time that is required for the leg lengthening, and still not be able to use his feet due to his ankles being fused, Matteo would lose most of his childhood being in a "Lizzy" frame. Basically he would need 4 operations per leg. Something we as parents don't want him to have-- (mostly because his feet would still be non-weight bearing.)

Kyle is my twin grandson with multiple disabilities, PFFD, with no hip sockets, severe short stature, pierre robin with a cleft palate, g-tube, tracheostomy. His twin brother is normal, they were born 3/30/04. Kyle's thigh bones, is only 20%developed and he has no hip joints? We are suppose to been seen in Maryland for a pediatric orthopedic consult.

djmetz@optonline.net

a photo of the cheeky one! in his sister tent!

Just a quickie update, and a happy new year to you all!

Tom is now nearly five and is settled at school, (it took a long while!!!), and he is enjoying it very much,, he is THE most popular child in the whole school, of which im totally blown away, i was dreading school and bullying etc(i think most of us do!)
He is even doing PE and climbing on PE aparatus and dancing,but he doesnt like this very much as he says he looks stupid all the boys do!!
He keeps his extension on, and he knows his limits, there arnt many though, he tries it and if he cant he will try again before he resigns to it.

Hi Everyone.
We are parents of a new born who was born with bilateral hememelia. 3 digits on right foot, and 2 on left. The right foot has a heel bone, the left does not at this point.
We are going to BC Childrens hospital in a few weeks to speak with a specialist about long term forcasts, possible amputations etc etc...
Knees and hips are normal.
There isn't alot of information or support out there, so please, if you can help out, any information would be greatly appreaciated. Send your email and I will respond.
thanks Gino/Katherine

Hello

I was curious if anyone knew of any doctors in Arizona that perform the super hip surgery or limb lengthening surgeries? My son Chase will need the super hip surgery this May, and we are hoping Dr. Paley will be performing the surgery. We have been seeing Dr. Paley since my son was six months old, and he will be turning two years old this March. Our insurance company is giving us problems covering the costs of his surgeries since it is out of state, and is determined to find a doctor in AZ to perform the surgeries. We do not feel comfortable sending him to just any doctor. From what I hear, Dr. Paley is the best!!

Hi everyone. My name is Jen and my son, Luke, has PFFD class 1b(Dr. Paley classification) in his left leg. He is 17 months right now and although this is my first time actually writing on this wonderful site, I have to say THANK YOU to all who have shared their stories b/c it has helped me out tremendously!!! I absolutely crushed when he was born and we found out about his leg. I cried for 2 weeks straight and then I realized that this was not the end of the world. I have been reading entries from this site for the past year and all of these children are such inspirations!!! Luke will have an estimated 28cm.

Hi my name is Michelle. Im from Dublin Ireland. My son Ryan has PFFD in his right leg and he is four. i have read alot of your stories and how some of you have alot of trouble finding trousers for your children. The prosthesis Ryan has his foot doesn't point outward it points down and i find its alot better for his balance and i dont have to worry about finding the right clothes for him. I really hope this information is useful.