Triple Knot Productions, Inc has produced a documentary about three young Shriner patients and how they overcome their medical condition or disability. "Going For The Gold: A Tale of Three Kids" centers around Hannah McFadden one of the three Shriner patients who was adopted form Russia at a very young age and was diagnosed with PFFD. The doc tells her story while competing at the National Junior Disability Championships, a Shriner version of the Special Olympics that were held in Tampa, Florida.
My 8 y.o. son, BJ, just had rotational plasty a year ago. It has been a tremendous relief for us seeing that his limb was preserved vice amputated and for him, his prosthetic fit is better than before. For the past months, he's been complaining of back pain on his left side (the rotated side). Has anyone experienced what he is experiencing right now? Will this be outgrown? Other insights? -Ping
I would like to let everyone know of a Limb Difference Picnic (any limb) that
will be held in the Seattle area on Sunday July 22nd at 2:00 pm. It
will be at Shelter #2 Lower Woodland Park (just below the zoo). Address
is 1000 N. 50th St., Seattle, WA 98103. It is a bring your own
dinner/lunch thing. Balls and bubbles will be provided.
If you have any questions, just let me know and I will get the answer
for you. I am not personally going, due to many children and that I
live in Southern California, but I believe it will be a great time for
We are appling for ssi disability for Isaiah. Is this a waste of time? Is everyone else doing this too? What other sources of supplemental income is there so that we can provide the best possible care for Isaiah? Do most people with PFFD qualify for SSI?
Hi, I have an 18th month old daughter that was born with Congenital short femur/PFFD with her left leg shorter than her right. Since she was born I have been taking her to the Childrens Hospital in Oakland, but I recently decided to change over to Shriners. Basically my two options are either lengthening or amputation and I don't know what to do. Can anyone who was gone through either one give me any feed back about your experiences. Thank you
so, I don't understand the A, B, C and D classification. Is A like a mild form and D extreme? I asked my parents and they don't know what I am either. So, I'll just explain it... I was born with out the Ball of my hip (I have a socket), my femur was a lot shorter, and my knee was pretty much normal, it's a little smaller and has a tiny knee cap though compared to the other one though. Anyone know what that falls under maybe...I'm just curious because I'm trying to search for people similar to me.
My 21 month old granddaughter was recently diagnosed with PFFD. The orthopedic indicated that she will have to have leg lengthening or shortening by the age of 8-12 for a 7 cm discrepency . Everything that I've read indicates that surgery is being performed much earlier than this if lengthening is the chosen procedure. Being totally unfamiliar with this disorder we are not sure where to start to seek the best medical treatment. Can anyone tell me who/where is considered to be the best in this field? Thanks for your help.
My son Julian is 13 months and was diagnosed to have Bilateral PFFD and Fibula Hemomila in both legs. He also had a club foot which was corrected by surgery in this past October.
This month we were told that Julian can have regular shoes and that a brace will be made for his feet to fit both sneakers and sandals. We are excited as can be since he is moving from these awful AFO's that went to his knees to braces that fit inside actual shoes. Our Physical Therapist and Orthotic will be adding a lift to his right shoe since it is about 2.5 inches shorter than the left.
Hi, My son has an important appointment at Shrieners next month. The prosthetisis said at our last appointment 4 months ago that this next appointment would be used to decide on treatment and schedule surgery. Needless to say I am so nervous, my stomach turns every time I think about April 18th!
My daughter has a 4 cm length discreptency in her right leg. I have some child's dress shoes size 9 USA to give to a child with the same leg length difference. These shoes have a added lift of a little over 1.5 inches. My daughter has bilateral PFFD, but the right leg is shorter then the left. These shoes were barely worn, look new. They are great for church and dressing her up. I will ship for free. I just want them to go where they are needed. She wore these when she was 4 and since then has had multiple shoes made.
