PFFD VSG2

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.

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.

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)?

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.

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.

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".

I am a 28 year old guy with PFFD in my left leg. I haven't had any surgeries yet in my life for it. Because my foot is smaller, angled downwards and only has 3 toes, I've been able to wear a straight-legged prosthesis without anything "protruding" outwards. Basically, when wearing jeans, it looks pretty normal.

The problem I have is I can't sit in back-seats of cars, can't ride many roller coasters, can't sit in alot of theaters to watch movies, because my leg is always "straight". They couldn't put in an artificial knee, because with my foot, it is just too long, and the knee would be too low to be of much value.

Well I know that every parent thinks that their child is always the most beautiful and most inteligent child that there is out there but I have to say it about my little one. SHe is just starting to eat little bits of solid food recently and last night I turned my back for just a second and I could not believe that she picked up the spoon and tried feeding herself bec/ apparently I was not doing it fast enough for her. Check out her new picture.

Love,
Heather and Kalyn

Hi,
My grandson is 8 yrs. old.
He was born with pffd. He has been wearing a lift
for several yrs. now. Nothing stops him from doing
anything. Not even that big lift he wears.
When little Chris enters the room with his
big smile everyone focuses on him.
Iam not sure what my son wants to do
at this point.
Finances are a big problem.
Is there help out their for this kind of thing?
If anyonr knows some info let me know.
In the mean time I will enjoy watching this little boy smile from
ear to ear.