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

Devon Angel

My granddaughter Devon Angel was born in October 1998 with PFFD. She was born in a suburb of London. She also had a hole in the heart (which has now closed up). After spending two weeks in Neo-Natal, she was allowed home with my daughter and her partner. Those early days are cloudy for us all as we were all in a state of shock and couldnt understand the complexities of her condition. My daughter is a dancer and Devon`s father a healthy, sporty footballer. How could they have a baby with half a leg? It was beyond our comprehension and filled us all with dread and confusion.
From the very beginning Devon was a fighter. My first glimpse of her lying naked on the "open" cot in Neo-Natal was one of astonishing emotion. With tubes everywhere, a tiny bonnet on her head and a white covering her lower limbs it was hard to imagine anything being wrong with her. She looked so vulnerable. I promised her I would watch out for her and keep her safe - I wanted to put everything right.

Electrical Stimulation and Limb Lenghting

Hi, Frank Gratke here, son Kevin, Aitken class D, right leg. Electrical Stimulation(ES) is now being used for spinal cord patients. The electroids are placed directly into the muscles. This allows a stimulation of the muscles in a very controlled envioronment. We have Dr Brain Black here in Milwaukee Wisconsin. We have heard of Dr Randall Betz who does spinal cords and Dr Dror Paley, who carves hips ,out of Maryland called me a few years ago.I am of the believe an Aitken Class D can be surgery corrected if ES is used. If I can get the three doctors talking I believe my son can have 2 legs alm

Finincial Aid in PFFD

Dear all ,This is Soni again , 30 years old with pffd , As there is pain and swelling in my good leg yet and I want to immigrate to canada and my life will be new , and doing work is hard to me , I want to ask is here any chance for me in Canada to get financial aid ?
Thanks a lot for your reply,

Hip Surgery

My husband and I have some questions for the group about hip surgery (actually femoral osteotomy). Our 3-year old daughter, Allison, has bilateral PFFD. She has a short femur in her left leg (Paley Type 1b) and no femur or hip socket in her right leg, so her right foot falls slightly below the level of her left knee. She wears a prosthesis with a hinged joint on her right leg, and she walks pretty well.

Allison has never had any surgery, but her doctor recently recommended a valgus osteotomy to correct the coxa vara in her left femur (her better leg) and to derotate. We'd like to get some feedback from others who have had experience with this surgery. Allison is not a candidate for lengthening, so the purpose of the osteotomy is entirely to improve her walking ability (i.e., not in preparation for lengthening).

Tai's progress

Hi this is Brandy my husban and I had a baby in Oct 2004 with bi-lateral pffd. i just wanted to let everyone know that Tai is doing very well she is now 17mths and is walking around everywhere but still enjoys crawling around on her hands and feet. If anyone else has a child wiht bi-lateral or knows someone with bi-lateral we would love to talk to you about things. I hope all is well with everyone else take care.

Brandy and Brett Dubord

Is hip replacement an option?

Hi there!

I just found this site, and I think it's great!

My husband, who is 31 years old, has PFFD. His foot was amputated at age 2, and his knee joint was fused at age 15. He gets around great with his prosthetic leg, but he has a fairly severe limp because of his missing hip joint.

I worry about possible future effects of his swaying gait on his back and other leg. I've always wondered if a hip replacement would be possible for him.

Has anyone had any experience with this?

Thanks!
rudimae

sports and pffd

My son is now 6 yrs old. He has pffd and fibula hemmumilia. Both of his feet were amputated. He is now in school and would like to play sports like the other kids. I try not to treat him different, but i worry about him playing sprots and breaking something. I am wondering if anyone has any opion about this or suggestions.

A story that gives me goose bumps

Our son Korbyn was born in 1999, and at the time we lived in Wyoming. Were the doctors are not the best. I went in for my 20 week ultrasound, and they didn't tell me anything other then i needed to go to Billings, Mt to get a 3-D ultrasound. So we did. They kept me over night in the hospital, not telling us anything. The next day I was discharged. But when we got to my uncles house there in Billings, the doctor himself called. He told us that he wanted us to come straight to his office for the findings on the ultrasound. When we got there. There were 6 doctors all sitting in a circle. They then went on to tell us that he would be a dwarf. They sent us to Denver for more testing. When we got there and the testing was all done. They told us he had no left leg. But that there was a foot not conected to anything. They also said it looked like he would still be a dwarf, but that there would probably be some mental illness. They thought at that time that we should termanate the pregnacy. We both said no. We went home, and found another doctor who had just moved to billings. He was a Perinatologist. He was amazing, so soft and sweet. He took us under his wing. By this time I was 27 weeks along. the doctor decided to do ultra sounds every day and tests almost every week. At 37 weeks, my Wonderful son was born he was 5lbs and 15 1/2 inches. But when I looked at him, I thought he isn't as bad as we expected him to be. He was alive and cring. They did all kinds of tests on him. And by late that afternoon he was in my arms. He had 2 toes on his left foot and it was turned backwards and his right foot had 4 toes and was turned to the side. At 3 months old I took him to the Shriners hospital in Salt Lake City. They told us he would never walk that he would be in a wheelchair all his life. We told them that we wouldn't accept that. I then took him to several different doctors. We ended up at the Spokane, Wa Shriners. they said we can do this and this and this. We said OK. At the age of 10 months his feet were amputated. we got his first wet of prostetics at the age of 15 months. It was a long hard road. 3 yrs later. He took his first steps without any help. Just out of the blue. It took our breath away. My husband and I were speachless... Since then he has had his Knee in his right leg taken out and the knee that was growing in his left hip removed. Now his has just gotten his first set of legs with the knees in them. And that was just 3 weeks ago. He is already walking again, without his walker. My son i do believe is a miracle. He has taught me so much. The most important thing he has taught us is to not take things for granted. We would love to hear from parents in the same situation as us. Our son is now in school, and I know soon he will start asking ?'s Maybe someone out their can give us some ideas on what to say. our e-mail address is kevnlissa2001@yahoo.com

Experiencing PFFD

I was born with P.F.F.D, Aiken Type I, and coxa vera. After careful consideration my parents decided that they were not going to go ahead with an amputation which was suggested when I was a toddler.

I have had various surgeries including the following:

(2 years)- Valgus Osteotomy - right femur

(3 years)- Repeat Valgus Osteotomy - right femur due to loss of fixation

(9 years) - Left Distal Femoral Epiphyseodesis

(12 years) - Sutherland Double Innominate Osteotomy and Ileoposoas Recession

(13 years) - Ilizarov Leg Lengthening

(27 years) – Total Hip Replacement

My femur discrepancy was approximate 18 cm. I have a lift on my shoe, and have had surgeries including lengthening of my short leg and shortening of my long leg.

Checklists for getting a new prosthetic (prosthosis)

For a child's PFFD prosthetic where there is no amputation the fitting is different than what most protheticists are used to working with. Each PFFD case is different. In our case the foot/ankle/tibia/knee are all unaffected. So far (she's almost 3) we've opted for no surgery and to just use a Mosely-type protheses but made of lightweight flexible carbon-fiber.

There are a few key differences we've discovered between the "standard" prosthesis design and a PFFD one including:

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