Personal Stories

If anyone has any information on resources for a child with pffd please let me know. My son had class c pffd that will require a new prosthetic each time he out grows one. He will also require surgery. We have been turned down for medicaid twice and are currently awaiting for word back from social security. We are looking into the shriners hospital. any suggestions?

I have to give many many many thanks to the Shriners... both in Greenvile and in Tampa, Florida (yes, you guys... Ron Gingras, Debbie, Danny, Fred... all of you). I grew up there and those people celebrated my every accomplishment. I remember when I was a little girl I brought my roller skates with me to the hospital and the staff stood outside while I skated around. In the hallways, everyone says hello. They really treated me like a was special there. It wasn't just that they made me legs... it was a whole experience.

Thank you to everyone who sent us emails or left comments of support on Daniel's blog (http://danielrigby.blogspot.com). It really means a lot to us.

Today for the first time, Daniel experienced what it is like to have two feet on the ground! He tried on his first prosthesis which will be ready to take home at the beginning of September.

Sami is now 4 years old. She is as active as just about any other 4 year old girl out there. She has class-D pffd, affecting her left leg. She participates in gymnastics (she can do a cartwheel now...but loves the uneven parallel bars the best). She also LOVES to swim, which has to be really good for her, right?

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??

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.

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'?).

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.

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.

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.