well I tried to get shane on SSI and they denied us was just wanting to know if anyone else has ssi and how the went about getting it We are next to broke and all this traveling around to different drs is cutting into money we need for bills and money to live on and was hoping to get extra help so we would be able to give him the best care we can and I don't know what else to try and one have any ideas please let me know sassycountrygal25@yahoo.com
I have this wonderful son born with PFFD. We have been treated at Sinai Hospital in Baltimore at first by Dr. Paly and later by Dr. Standard. We now need another surgery but my insurance company bailed on us. Does anyone know where I could possibly turn for assistance. I have some money saved up but it is nothing compared to the cost of the surgery.
My family Dr. and pediatrtian are trying to figure out the best way to track Brooke's growth and weight. She is a bilateral, so I am in the hunt for...or how other bilaterals, have been measured and weighed......HELP!
Hello my name is Vicki. I am the girlfriend of Southerncritter who wrote doing fine at 32. I am just curious if PFFD is indeed what my boyfriend has. He has a very short thigh bone on both sides and his knees are basically up where his thighs would be on both sides. I find it odd that his family never investigated and tried to find out for him what he actually was born with. He has thought all along that he was just born genetically wrong and actually thought he was the only one like himself around.
I really do not know much at all about PFFD other than that my girlfriend has been trying to figure out why i am the way I am and discovered PFFD. I was born 3 months premature to an insulin dependent diabetic 17 yr old mother in 1977. I had cleft palate deformity and problems with my lungs and no thighs. i am not sure if they knew about the thighs at the time due to all of my other problems. Both of my parents, being teenagers did not want to be saddled with me and split up within a year of my birth leaving me with my wonderful grandparents. I did not leave a hospital for 3 months.
His birthday is in March and he is growing into such a little boy!!! Active as anything and is constantly telling me to "Check it out!" Whatever "it" is...
Hallo everyone. I really just wanted to find out if anyone could give me information on Extension Prosthesis (no amputation) as my daughter, Olivia, is now 9 months old and will be having a super hip and knee operation done by Dr Paley next year. He did however predict that she would require at least 3 lenghtening surgeries and i am strongly looking into alternative options in order to avoid all the pain for her.
Igor is a 15 year old Russian boy born with PFFD. He came to America in 2007 to have his left foot amputated. He had the surgery at Shriner's hospital in Greenville, SC. He was then fitted with a prosthesis.
He is small - around 4 feet tall, but nothing holds him back! He just signed up to play baseball with the local homeschool league. We play racquetball several times a week and he is getting really good. He plays football, basketball, any kind of sport really.
