PFFD VSG2

http://www.wflx.com/Global/story.asp?S=11932895

Just a quick reminder that there is another limb length discrepancy chat this week. We usually have a number of families with CFD participating, if you want to "pick" their brains. For further details see the previous post which includes contact info.

My 2 year old son Daniel just had the Superhip 2 surgery in January with Dr Paley. We regularly update a blog about Daniel and I have recently posted a detailed entry about our experience that I thought might be useful for those families who are thinking of or embarking on this journey. Please feel free to contact me. The blog can be found at www.danielrigby.blogspot.com.

Regards,
Kristen (kristenrigby@gmail.com)

My grand-daughter Malgosia is 3,5 years old. We live in Poland,
Bialystok. She is born with a right congenital femoral deficiency
Paley type 1 B. Thanks to God we found Dr Dror Paley, who examined
Malgosia and qualified her for treatment with 98% chances for
recovery. 1 reconstruction and 4 lengthening surgeries are planed.
Please find analysis and recommendations from Dr Paley below.

Costs are very high. Could anybody share his experience in acquiring
sponsor to finance the surgeries to be performed in St.Mary's Medical

Hi everyone. My daughter Madi is 16 months old and has pffd in her right leg. She is scheduled to have Superhip surgery with Dr. Paley in October. It has been so great to hear other peoples stories and know that you are not alone. Madi does pretty well so far. She has a 7cm lift and an AFO brace to stabilize her ankle. So far she really doesn't walk much. She has taken a few steps but really doesn't seem interested. We first met Dr. Paley on August and we were so impressed. Every other Doctor we had talked to told us that there was nothing that they could do. Dr.

I just wanted to give a little history, hopefully provide a little encouragement, and just see if anyone out there has questions during or before this process. I am now 23 years old and have been with Paley since before he was on his own when I was 8 months old. I have unilateral pffd with out a fully formed hip and knee. When I was finished growing I was going to be 22 inches from the ground. I had 6 lengthenings and took a break to finish high school and college. I had my 7th lengthening in Dec.

Has anyone had the Super Hip 2 surgery with Paley? Dr Paley said my daughter needed the Super Hip 2 wich is a little more detailed than the Super Hip 1. I think he has only done around 10 of these. I would greatly appreciate any info anyone can give me on this.

Thanks!

Update: My super-hip and knee surgery with Dr. Paley had to be rescheduled because I came down with bronchitis. My NEW surgery date is going to be Feb-18th. I was in Florida last week because a media crew was interested in hearing my story. I did some filming while I was there...big step for me considering my condition is something I really just now started talking about openly. I don't know when or where the video will end up but it's out there. For those of you that don't know, I was born with PFFD and at 23 yrs old have a length difference of 10 inches.

Hello Everyone I would just like to say 1st how excited I am to have come across this website with all this information. I have been on line for about 2 hours reading these stories that I had no idea were even out there! I am completely Amazed. My daughter Brandi is 9 yrs old and was diagnosed with PFFD when she was six months old. I was playing with Brandi on the floor and was looking at legs and discovered that one of her legs were longer then the other..

Happy New Year!

Just a quick not that the doctors at the International Center for Limb Lengthening are conducting some more online chats. The next one is this week on Thursday Jan 14, with one the following month on Feb 11.

Happy New Year!

Just wanted to remind everyone that we are continuing to conduct our monthly limb length discrepancy chats. The next one is this Thursday Jan 14 at 9:15 PM, and the next one will be the following month February 11th.