Personal Stories

Chezza's Story

I am simi new to this site and figured Id go ahead and share my story. My husband and I just had our first child, a baby girl, on August 20th 09. We got married last November and I got off Birth Control the night before we got married since we were wanting to start a family as soon as possible. I had been on prenatals for a few months prior after our OBGYN recommended it. We got married, went to Vegas and a month later, found out we were pregnant. I got very sick with her. Lost about 25lbs and wasn't able to take my prenatal vitamines.

Caught off guard

Hello everyone!
My son Gabriel was born with PFFD. I found out about his condition when I was about 17 weeks pregnant. My mind went about a zillion miles per hour when the Dr told me what he saw on the ultrasound. They gave me a couple of options on what to do with the info that was given to me including abortion. That decision was easy to make.....I"m gonna keep my baby no matter what they told me he had. I was blessed to be given the opportunity to have a child so I was gonna have him the way he was given to me.

Tristans' story

My son was born April 23, 2009, he was born with pffd on his left leg and on his right leg he’s missing his fibular bone. He also only has four toes on each foot. I had 5 ultra sounds during my pregnancy and nothing showed anything wrong with his legs. When he was born it was very hard to deal with but he was loved very much. I could not stop crying and I remember while holding him he gave me a smile as if to say everything was going to be ok.

Finding Answers! The experts have responded!

Since a prior post I have gotten more information. I am feeling so much better. Thank you to those who have assisted! Insurance covers all "in network" docs the same, so if we use an out of state one (Dr. Paley or Dr. Herzenberg, for example) the out of pocket is the same as if we continue with doctor at UNC. Dr. Paley has numerous videos posted on his site at www.limblengtheningdoc.org under the conditions page, and Sinai Hospital's site (Int'l limb lengthening center) has a lot of helpful patient tips about treatment etc. I have emailed both Dr. Herzenberg and Dr. Paley and have gotten prompt responses. Medical records and xrays are on their way to those experts.

Nicholas age 5 facing decision lengthening or? Need your help

Hi Nicholas is 5 /12 unilateral pffd. Was never told classification and only got estimate descrepancy form doctor at last visit when we pressed- 20 cm. Have been seeing unc hospital pediatric orthopeadics and had 2 hip surgeries: Osteotomy I believe. Have had many unanswered questions. Don't know where to start or how to get proper support to address choices, consequences of choices and what we need to consider psychologically for him as well as estimated logistics (if we go to Dr. Paley in FL, how long will we be there, what will it cost, does insurance cover all doctor costs similarly? Dr.

Trousers/pants for a little girl with Bilateral PFFD

Hi there,

I was wondering if anyone out there has a little girl or knows a little girl with Bilateral PFFD Class C/D who is in need of some trousers/pants. I have been sorting out all our baby things and came across a bag of tights and trousers all of which were shortened/adjusted for our daughter. The sizes range from 3 months to 2-3yrs. I'm happy to post them anywhere in the world they are needed so please do get in touch.

My appointment Dr. Paley

Hey everyone its been awhile since I've been on the website, anyways let me tell you alittle bit about my self I am a 22 years old female with my left leg amputeed. When I was 1 year old I was I got my first surgery. and after that I was told that nothing else could be done to make me walk better, well that was what my parents said. All doctors always said to me and my parents that my condition is so rare that alot of the doctors didn't want to miss with it. I finally found out about Dr. Paley that he was moving right around the corner from me. I called and set an appointment.

Life Is busy

Hello all and just a quick note to say that I have been so busy with all the kids home for the summer I have had no time to sit down and relax....THANK GOD school started today. All but one and he starts tomorrow. I will be glad to get back to a "normal" day if that possible. Well I have missed talking to some of you. Take care and chat please.
Barbara

My appointment with Dr. Paley

Hey everyone, just wanted to update on my visit with Dr. Paley. In case anyone hasn't read my story here's a little summary. I'm 22, have PFFD of one leg and have never had any surgeries whatsoever. I have wore a long prosthetic my entire life. My length difference (more than I thought it was when I first started writing on here) is 10 inches. I did a little research a couple of months ago on treatment and options when I discovered Dr. Paley for the first time. Most of you have probably heard of him but he does lengthening AND the hip and knee corrections that come along with having PFFD.

Justin's super hip

On August 6, 2009 Justin had his Super hip/knee surgery.
It went longer than we or the Dr. Expected as there was more that need to be done. Justin is recovering. He still says this is the way to go!!!

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