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

Dylan's Journey

Hello, my name is Amanda, and I am a parent of a little boy with PFFD. Dylan is 2 years old and was diagnosed last September (2009). He is scheduled for a hip osteotomy next summer (2011). I am not really sure what that means, other than that he will be in a cast from his chest to his legs for 4-6 weeks after that. I am afraid what that will mean for him, because he is a VERY active little boy. The reason I joined this website was to connect with other parents about what to expect in the coming months and years; from surgeries - to his entire future.

PFFD / CFD live online chat on July 29

Just a quick reminder that Drs Standard and Herzenberg will be doing their regular chat this week. This chat is for congenital limb differences, so most of the families will have congenital femoral deficiency or fibular hemimelia or both.

Time: 9:15 PM EDT (Note that this is the time zone for Baltimore, MD or Washington, DC)
Place: http://www.chatzy.com/600868137410
Temporary password: lldtest (so that you can test the room out)
Day of chat password: must be requested by email through
icll (at) lifebridgehealth.org

stacked left shoe...boy

I was at Goodwill today and my son pointed out a pair of shoes. They are in good shape. They are New Balance, black high-tops. Size 12 (Boys). The left shoe is stacked 1.5 inches higher than the other. They were only $6.50! Let me know if anybody needs them.


My daughter has been getting a petechiae rash off and on for almost a year. Her pediatrician thought it might be linked somehow to PFFD so I was wondering if anyone has had this problem. We're currently working on getting a referral to a specialist to have this check, but I thought I'd ask while we are waiting.

fundraising for pffd

My grand niece will start the lengthening process in the fall. Her family will need financial help. Is there a national organization that can assist with this? If not, are there certain steps that need to be taken to establishing a find raising effort. Should a formal fund raising organization be established? If so, what are the steps that should be taken? Thank you.

How early can lengthening start?

Hi, My daughter Ayanna has unilateral PFFD. She is now 1yr 3 months, I was wondering how early lenghtening procedures can start? The doctors I have met have told me that they will advice me in due course!! I need to know to plan!! Please help


Having a Baby

I'm really pleased to announce that my wife Alex and I are expecting our first baby this coming Christmas.
We went for Alex's 12 week scan yesterday and thankfully everything looked normal, which of course is what every parent wants to hear. It was such a great experience, looking at little baby Bailey moving around, amazing.

Next online PFFD/CFD chat on June 17

Just a quick reminder that Dr. Standard is again hosting our monthly chat on congenital limb differences (CFD, fibular hemimelia etc) this Thursday at 9:15 PM EDT.

This is a great way to be able to ask questions without having to make an appointment.

For details on registering, please email icll (at) lifebridgehealth.org, and give the child's age and diagnosis, and mention you heard about the chat here. (Just being safe... we've had a few "questionable" people who have asked for info and like to make sure everyone is "legit").


plasma car

I know others have discovered this in the past on this site but I just have to say how much we love our Plasma car. This has been the best toy our son has ever recieved. We just put in wood floors in our whole house and our (almost 4 year old) cruises all over the place. It makes trips to the bathroom and trips to get more toys from his room fun and easy when his prosthetic is off. He hops on his "bike" and off he goes. We found it for $36.00 at Costco!


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