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Personal Stories

Jessy's story...

My name's Jessy and I'm 21. I have PFFD in my right leg and I wear a brace, and use crutches. Until I was 7 I wore an extension Prosthesis. Then I had my first lengthening. I just remember my knee being stuck bent for 6 months mostly (because the muscles were so tight), and I spent a lot of the time in the hospital doing physical therapy. I don't remember exactly how much length I got each time I wore the Ilizarov, but my mom told me that altogether I've gotten 13 inches from the 4 lengthenings I've had.

Update on Emily

Emily had her surgery back in September of last year. It took about three hours and everything went great. She was in a cast until October. She was fitted for her first leg at the beginning of November and recieved it on November 31st. She goes to physical therapy every week and are awaiting the arrival of her send prosthesis. I will try to keep everyone updated and if anyone needs to talk just contact me.

How we found out about PFFD...

My name is Emily Guerra. I live in the Atlanta, GA area with my husband, Reinaldo and son Julian. Julian is now 13 months and is growing faster than a weed and finally walking around some. He will be walking on his own soon. He is our only child for the moment and we are thrilled that he is here with us.

I'M LOOKING FOR A PLACE TO PUT LIFTS ON MY DAUGHTERS SHOES IN LACASTER,PA

ME AND MY WIFE ARE LOOKING FOR A NEW PLACE TO HAVE LIFTS ADDED ONTO MY DAUGHTERS SHOE IN LANCASTER PA OR NEAR LANCASTER SHE HAS ABOUT A 4 1/2 DIFFERANCE AND WE NEED TO FIND A GOOD RELYABLE PERSON TO ASSIT US IN OUR SEARCH. PLEASE CONTACT US

Update on Romie and I

Havent updated in a while on my son Romie, he is doing great, He's three and a half now and is the sunshine of my life. His right femur is about 3 and a half inches shorter than his left which is a larger difference than before, but with his condition this is to be expected. Romie is in pre school now and has been learning so much, his teachers tell me that he is a joy to have in the class, he loves to dance and sing and finger paint with his friends and his favorite teacher Ms Emily.

My Son has Fibula hemmophilia

My son who is 4 and 1/2 months old was born with missing fibula bone.we are still in the boat of deciding what is good for him...all the doc's we have seen so far has said amputation is better because the difference is too huge between two legs and his ankle bones are absent.
I am also visiting Dr hezenberg next month to discuss about his opinion on limb lengthning.
meanwhile on my research regarding amputation,I came to know about the Phantom pain,but do the kids who get the legs amputated at age of 12 = 16 months also have that pain...

23 year old from new zealand with pffd

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.

CAUSES OF PFFD

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

seen by the specialist

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

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

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