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Personal Stories

My Brooke

Our 6 month old daughter, Brooke, was born with BPFFD, and complete absence of both arms. She is missing her femur, fibula, knees, and both hips..as well as both her pinky toes. Other than the "obvious" Brooke is very healthy, and bright...but i'm biased....is anyone else missing their hips?? and how is walking??

Pictures!

Lots of pictures...

Here is the first prosthesis I used, before I had my 'little foot' amputated.

The ones of me sitting on the floor with the package are me opening my first 'bending leg'. After my amputation I wore a straight leg prosthesis (as in the picture when I'm sitting on the floor). Back in the day, they would just mail you your leg, isn't that funny? I remember they would make it a little taller than normal so that I'd grow into it. Whew!

Here is also a picture of my lovely family, one of me and my oldest daughter dancing.

Infancy

I was born in 1977. My father is a police officer and my mother is a famous doll maker. When my mother was pregnant, ultrasounds were not the norm, so my parents had no idea about my limb deficiency. My mother says she would tell the doctor something felt different throughout her pregnancy. "This one doesn't kick as much", she would tell him, comparing me to her two other normal pregnancies 10 and 8 years prior. When I was born, I was taken away without explanation and my parents were left to imagine the worst (anyone see 'It's Alive'?).

My daughter and I 26 years ago.

Sparkler

This is my daughter and I at a cabin on summer vacation. She was such a little doll.
I remember after Barb and I got married, and we decided to have a baby, we wanted to know what the odds were of having
a baby with birth defects like mine. I went to a genetic clinic, and went through all sorts of tests, and had many x-rays taken of me.

This whole experience has been awesome for me

The last three weeks (since the People article on Lilly and Maya) have been quite exciting for me. To learn what my condition (no longer called a disability) really is called and to know that there are so many people who either have, or have children that have PFFD, has made me feel much more complete and much more at peace with myself than I ever have before. Actually emailing and talking to Lilly and Maya's Moms has brought me to a point of unbelievable respect and admiration for my own parents, who have died.

My sweet 6 year old Kayla

Okay. So i have finally worked out a plan with my daughters doctor (she has seen her for the past two years and is amazing). We call it the sit and wait game!!! I love it. We were told early on that Kayla wouldn't walk roll over or crawl. They were all wrong. My daughter is very stubborn ( don't know where she gets it from-lol). When she wants to do something you had better hope that you are a part of it or you will have to clean up the outcome of whatever project she has gotten into her head. She would sit and watch my son running circles around her and stealing toys silently.

A few more younger pics

Here are a few more pictures of me when I was very young.

This one I think was on Easter, and I think I must have been around four. My sister was kneeling so you can see how tiny I was.

Easter pic

Kinnick is Walking!

The last time I posted, we were still looking at treatment options for my son Kinnick, who is unilateral PFFD in his left leg, with a good hip, very short femur, and absent fibula. That was over a year ago.
Well, we have since chosen a Symes amputation and prosthetic for Kinnick. He had surgery the week of his first birthday in March at Shriners Hospital in Minneapolis, MN. He got his prosthetic in the middle of April. He started walking a few weeks ago right at 16 months! We are so proud of him and are amazed by his progess everyday!

Kyle- twin with pffd class d

Kyle has bilateral pffd class (d )with no hip joints. At 4 he is only 30" tall and 25lbs. Kyle has other disabilities called pieere robin syndrome- he was born with a under developed lower jaw-cleft palate, ear tubes. Kyle has had 2 jaw distractions already. Kyle has has 8 surgeries already and Kyle also has a trache and a g-tube. With all of his issue's he is always happy and always playing sports, he dosnt sit still for 1 minute.

Another new girl...

Wow. I am kinda overwhelmed by finding this site! I never knew the name of my condition before my husband brought home the People article about PFFD, much less that there were so many other people with the same thing.
I am 30 years old with, I guess, bilateral PFFD. My right leg does have a kneecap and a very short femur. I only had one surgery when I was 8 to remove part of the growth plate in my right knee so that leg wouldn't grow TOO much faster than the left (where there is no joint or femur).

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