If you are new to PFFD - I recommend starting with the PFFD book

A homemade DVD of McKenna's progress with PFFD

Hello from Minnesota!!!

We recently have finished making a 2 dvd set showing McKenna's progress being treated for PFFD. These disks are the 4th version of this documentary that we have been sending around the world to families looking for information about PFFD. Now since we are not movie making professionals they are not the greatest as far as visual quality, or editing, but they do show McKenna before any treatment was done, then they show her after her first couple of surgeries to fix the "Bend" in her thigh bone. Then we included a video of McKenna at a doctors convention about PFFD which shows her initial xrays and Dr. Paley giving a brief description of her plan for treatment. After that we finish up with an interview with McKenna and show her today, at 8 years of age, after her 2nd lengthening. We also included 2 documentaries that show the lengthening process. These were done by news companies and they do show other cases of lengthening that don't involve PFFD, but the information shown is very useful, so we left those in too.

Olivia’s appt with Dr. Paley

Olivia had her appointment with Dr. Paley last week. This was the first time for us to personally meet him. His schedule was really tight and he was only able to meet with us for a short time, but overall we were very impressed with him.

Insurance

Does anyone have any experience with obtaining insurance to go to a leg lengthening center of choice or to Baltimore? Our insurance is an HMO and they will not let us go out of network or out of state(Dr. Paley). We have exhausted all options with trying to find different insurance, but since it is a preexisting condition we are having no luck. We may have to resort to my husband finding a different job, but with the economy the way it is we only want that as a last resort. Just wondering if anyone has any suggestions? Thank you.

Writing a book!!

Hi everybody!! I am planning on writing a children's book. I want to focus on children with PFFD, but also include children with other disabilities.

I will use photographs: couple of reasons, I can't draw and I think it's important to see children for how beautiful they really are!

My initial thinking is "favorite things to do." So many people focus on what someone with a disability CAN'T do...let's amaze everyone with what we/our children LOVE to do...

Feel free to email me with your child's fist name and age (or your name if you have pffd) and his/her favorite thing to do.

For instance: Sami, age 1, loves to climb on the kitchen table! This is something I didn't think she'd be able to do already!! I'm so naieve!! lol! I would include a picture of Sami on the table with her adorable mischeivious grin!!

Commom features with PFFD

I am curious to know from other people with PFFD or parents of a child with PFFD, is there a small indent on the front of your leg at shin level? It is like a vertcal split about an inch long. I had this on both my legs, i've had an above knee amputation on my right leg, so now i just own the one.
I met a guy years ago at a swim meet who had exactly the same things on both his small legs. I looked at him and thought, "mmm snap! i've got those".
It may well have something to do with the bone formation underneath the skin, i was born without the fibula in both my legs.
A friend looked at my leg, just the other day, and said "oh, how did you cut your leg". So i had to explain it wasn't a cut, it had always just been there.

UK Adult with Bilateral PFFD also no left arm from the elbow

My name is David Bailey and I was born on June 14th 1976.
I was a premature baby weighing just 2 lbs 5 oz's!
It was obvious from birth that I had congenital deformities bilaterally, 3 toes on my right foot, and 4 on my left foot, and my right leg slightly shorter than left. I was also born with only 1/2 my left arm.
I was put up for adoption from birth, as my biological mother was only 16, and had kept the pregnancy secret from her parents and I think my biological father, and with my disabilities and no parental support from either set of grandparents, she thought that would be best for me.

Adult treatment

Hi,

I'm interested in finding anyone with any experience dealing with adults with pffd. I am a unilateral, treated with Symes, fusion and left AK. I have no idea what Aitkens rating I am. My left hip was a mass of fused cartilage when I was born. I was treated at Mary Free Bed Clinic/Blodgett Memorial Hospital in Grand Rapids MI, now known as the Center for Limb Deficiencies. At age 7, I underwent 2 surgeries; the first, Dr. Charles Frantz literally sculpted a femur head and a hip socket out of the cartilage, in the second he fused the femur and tib/fib together with a plate. (I had many other reconstructive surgeries, but these are the pertinent ones)

children’s books

I am looking for a good children’s book that I can read to my daughter that deals with the issues of having pffd. The only book I have found so far is “Harry and Willy and Carrothead” by Judith Caseley. It’s a cute book about a boy born without a hand who wears a prosthesis.

Is There any one in Canada with bilateral pffd?

Hi this is Brandy again. Our family lives on vancouver island off the coast of British Columbia, Canada. we have only seen one doctor concerning our daughter and I am wondering if there is more research or more knowledge of pffd in other countries, so please if anybody knows let me know. my personal email is angel_78@shaw.ca

Thanks a bunch
Brandy

Our little star

My husband James and I have a little girl called Jessica. She is 22months old and has Bilateral PFFD. She appears to have a rare type as she is missing several bones and the precise anatomy of her legs is currently unknown. She is missing the fibula but has feet but no ankle joint and is missing her little toes. She either has a tiny femur and tibias or a hip joint and femur. There is currently confusion about this.

Despite all this she is very mobile and gets around on her hands and feet - bear style. Her latest trick is to lift her body weight on her hands and flip herself over onto her back-effectively doing somersaults. It scares me silly but she thinks it's hilarious!! Nothing stops her and she has a will of iron. Is this a common trate? :)

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