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

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:

the red asterix next to a subject in your sent items of the inbox

Hi, i was just wondering, does a red asterix next to the subject in the sent section of a members inbox mean the sent email hasn't been read by the recipient? It's only i have a couple next to messages i sent to a member months ago, and i think she may not have read them.
Thanks for any help.

Dave

Prosthetics TV show

There is a new show about prosthetic devices called Rebuilt: The Human Body Shop that airs Wednesdays on the Discovery Health Channel.

The show features a few people (adults and children) each episode. It tells their story about why they require a prosthetic device and how well they are living with it. The stories are very uplifting. Last week’s episode featured a boy with fibular hemimelia who was born without his foot. He is now an accomplished soccer player with the help of his prosthetic foot.

Kelly Anne Dolan Memorial Fund

I have a bit of good news for those of us living in Pennsylvania, New Jersey, and Delaware. The Kelly Anne Dolan Memorial Fund (KADMF) [[http://www.kadmf.org/]] provides advocacy, education, information and financial assistance for the uninsured needs of families caring for terminally, critically and chronically ill, seriously disabled or severely injured children. The child must be a resident of Pennsylvania, New Jersey or Delaware, though may be receiving treatment in another state. The Fund helps both low income and middle income families.

Book!!

Hi everyone! I am still writing that book...I have about 13 different children. Some from the "I CAN" web site. I have included children with any limb difficiency. I want this book to be multi-cultural. Please let me know if you are interested or need more info. Contact me privately...and thanks to ALL that have sent pictures of your beautiful children already. I am hoping to have the book done soon! It's "done" I just need a few more children from different cultures.

Thanks so much!!

PS...Sami is walking indepently with her prothesis that is "Mosley-like" It's WONDERFUL!!! Sami is amazing!!!!

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