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Personal Stories

Sarah's Story

I'm a 26 year old woman from Oklahoma City with unilateral class A PFFD in my right leg. I had a Symes amputation and bone fusion when I was 14 months old. I am now working on my Ph.D in philosophy at Southern Illinois University in Carbondale and wearing an above-the-knee prosthetic with a very basic knee joint and foot and a fairly involved cosmetic cover. I am very physically active--my preferred activities being cycling, swimming, weight lifting, and hiking. With the exception of hiking, I do most of my activities without my prosthesis and so my main concerns with it are limited to comfortable walking, adeqaute cosmesis, and as natural a gait as possible. I would love to experiment with an athletic leg but unfortunately do not have the kind of insurance plan that would allow me to obtain one and probably won't for some time! But, I'm satisfied with things as they are now. I grew up in a fairly middle class family; my parents got divorced when I was a year old and my mom raised me for the most part. I was always lucky enough to have access to good prosthetists and to always have a prosthesis that fit. Everyone in my family has always been supportive, but my mom did choose to handle the course of my treatment and the inevitable personal difficulties that arose for both us during my childhood on her own. She did an amazing job; I was never discouraged from pursuing any activity that interested me, and while I was sometimes discouraged by the limitations resulting from my disability, I was always encouraged to push my physical capabilities to their limit. I played softball and basketball as a child but the only sport I ever became serious about was gymanstics, in which I was competitive for years. Any parent of a child with pffd should take note: it really is best not to set limits on your child's physical activity--even if you think that your child is interested in a potentially dangerous activity-- such as gymnastics, tree climbing, pole shimmying, etc! Let your pffd child test his/her limits. At the same time, do not simply pretend that he/she does not have a disability. Honestly address the fact that there are some things that are difficult and/or impossible with pffd, and that while pffd is far from being the end of the world, it is still a serious and difficult disability to deal with... While I was never teased in school for having one leg, my adolescent years were certainly difficult. I could not help but be self-conscious to the point of pain about my condition and was at times deeply depressed. However, I still tried the things that I wanted to do and was generally very much rewarded for my efforts. I attended a magnet school for gifted and talented children and was very competitive in my academic work. Also, while I was generally very worried that boys and men would not want to date me because of my leg, I always had a boyfriend in high school. And I always went to the prom! I was also lucky enough to have good friends--some of whom I am still close to. These patterns continued as I began attending college, and now, in graduate school I am pursuing a course of study that is deeply meaningful to me and that I love. I am engaged to a wonderful young man who is also in my program here, though we have no immediate plans for a wedding. I do not know whether or not we will have children, but I have become curious about the experiences of other pffd women who have gone through pregnancy and childbirth, and what their experiences have been as mothers. And of course, I am intersted in the experiences of all people who have pffd. Feel free to contact me with questions, stories, etc. I don't currently have any friends with pffd and I'm finally eager to meet some!

super hip/knee/ankle surgery

Olivia had her super hip/knee/ankle surgery in early August. Dr. Paley performed her surgery. Olivia was 26 months old at the time of surgery. She was in the operating room for about 11 hours. Since she was under anesthesia for so long, they put her in the Pediatric ICU for the first night of post surgery. Dr. Paley said that her surgery went well. He was able to do everything he needed and wanted to do in order to prepare her for lengthening.

born with pffd 54 years ago

I was born with pffd in 1952.When I was a child doctors said that what I was born with was very rare and at that time there wasn't a name for it.When i'd be on my left knee the right foot would be flat on the floor.I had my foot amutated and they tried to strighten my femur that was bent and short but it didn't work. My knee on the pffd side as alwas been bent but when I was a child I could move it some but as I got older the knee fused its self together and my deformed hip has fused its self together.I don't know if this has anything to do with having pffd but so that you all will be on the look out I was also born with out my uterus and vagina (some thing else that's rare).I've lead a pretty normal life.Some one had asked on the site if any one with pffd was short I'm 4'11.

two month old baby boy

I gave birth to a 7.5 lb. baby boy on 8-22-06. We had made it to each of our prenatal appointments and we did not suspect any thing was wrong. I had five ultrasounds to determine the location of the placenta, determine due date etc. Our doctors never found the abnormality. When our baby arrived we were shocked that there was something wrong. Our doctor had no idea what the condition could be and thats what he told us. So Josh and I sat for the next five hours with our first child, confused and scared. At 11:00 that night our doctor called us on the phone in our hospital room to report his findings via the internet.

Kalyn's Latest Visit to Shriners

Hello Everyone,

We took Kalyn this last week to Shriners for her 6 month checkup. They stated that she is consitered Class A PFFD and Fibular Hemimelia in both legs. They stated that she is not a canidate for bracing. They stated that when she beginns to walk that they will give her a shoe lift becuase they are expecting approx a 4 inch leg discrepency between her left and right legs. They will be recommending leg legnthing around 7 years of age. If they do not see the results that they are looking for after awhile of legnthing they will recommend amputation from the thigh down on her left leg to give her the lift that she will need to walk.

Old Photos

I've been meaning to post some photos ever since the facility became available on this site.
So here some are at long last. I'll never cease to be surprised looking back at old pics, thinking things like, "was i really that small once?" Also looking at me with both legs is a bit weird, as it's nearly 21 years since I had my right leg amputated above knee, I find it hard to remember having it and running around like a typical kid.
The first photo is the earliest one i have of me, it was taken at some point early in my life whilst in hospital. I weighed only 2lb 5oz's, approx. 3 months premature, i spent the first 8 months of my life in hospital as I'd been put up for adoption from birth.

flying with spica cast - doable or crazy?

My daughter is likely to need Super Hip + Super Knee surgery early next year, on one leg.

I understand she'll have to be in the spica cast for 6 weeks or so. We live across the country, so one big question is .....

do I stay with her in Baltimore the 7 weeks or so while she's in the cast, keeping accessible to Dr. Paley in case there are complications OR

since I have other young children and my husband who would have to hang in there 7 weeks or so while I stay in Baltimore, do I to make the cross-country flight home maybe after 2-3 weeks and then back 3-4 weeks later for cast removal (and then home one more time after that but at least without a cast)?

Save a Limb Ride

Hello all. I just wanted to let you know that this past weekend my husband, daughter and I attended The 1st annual Save a Limb Ride (www.savealimbride.org) to benefit the International Center for Limb Lengthening in Baltimore, MD. It was such a wonderful experience. There were an overwhelming number of people there who came to raise money for the Center which is led by Dr. Paley and his team. We saw so many brave children who have either gone through lengthening or are currently going through lengthening and they were all very happy and playing and running around being children. We also saw amputees who rode in the bike race or ran in the competition.

Carter

My son was born in 2000 and diagnosed with PFFD (about 6 weeks after he was born) at Primary Children's Hospital in Salt Lake City, Utah. When he was a year old we switched doctors and started being seen at Shriners, also in SLC. We were seen every six months until he was 5 at which time it was decided that we should start lengthening. The difference between his legs was 7cm. and his femur is also bowed at the top. Well, that was one year ago and our little guy, now six, is still in a cast. He has had so many complications. His bone has broken at the spot of the osteotomy two times since the lengthening device was removed.

JOSHUA

Dr. Dror Paley and Dr. Shawn C. Standard are the best.

Rubin Institute for Advanced Orthopedics, the International Center for Limb Lengthening, Sinai Hospital( Baltimore, Maryland - Sini Hospital)

My son "Joshua" (8yrs) - had

1. Super knee (age 5)
2. Femur alignment and Femur lenghting Leftleg 2.3inch(age 6)
3. Tubia aligment (age 6)

My son is doing great, but it was a long road.
I moved to Maryland for 9 months and 8 month of appointments (checkups) xrays, etc... from Texas to Maryland.

There is no better place.

The Hackerman-Patz House is "a home away from home —designed with the patient in mind".

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