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.
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!!!!
I am a 26 year old woman with PFFD. I am one of twins, and my twin brother was born with no abnormalities. I grew up a very normal life, and never let my condition rule my life. I received my first prosthesis when I was 1 years old. I have always been very active and received a new prosthesis about every year. I had my first and only surgery when I was 19 years old and that was a partial amputation. It was to allow my prosthesis to be more comfortable. I am now married and my husband and I are discussing starting a family. I would love to hear from other women with PFFD. I am nervous about possibly having children as I'm unsure if my hip could stand the extra weight. I just found this site today and I'm excited about hearing from others just like me!
I have attached some pictures of Olivia and her prosthesis (the same one she got in October 2005). These pictures were taken on Jan. 5, 2006 when Olivia was about 19 months old. The first 2 pictures show her prosthesis. The 3rd picture shows her without her prosthesis. The other pictures show her wearing her prosthesis.
First of all let me start off by saying hi. My son Landon (2yrs old) has PFFD (class c). He is walking, runing climbing, doing everything any other child does. Right now his left leg is 4 inches shorter than his right(he uses a lift on his shoe), but as time passes that difference will become greater. He is also missing his fibula and the ankle causing him to have a club foot that cannot be corrected by surgrey. Along with this he is also missing his left arm above the elbow and his right arm below the elbow with 2 little fingers. However he does really well with what he has.
I am wrighting to ask for you imput. The doctors are now talking surgrey. Shriners wants to amputate his foot. The reason they gave me was because emotionally it will be better if he was younger when the amputation took place. I not sure if I can see there point. I guess I keep thinkin in my head that maybe five years from now a new procedure will be developed that may better help him. Besides it is my baby's foot (and I love it very much) He also has no hands so I don't see the point in taking a foot off that he uses. Has anyone had experience with amputation?
Dear All,
This is Sonia , when I was born I had a
problem in my one of my legs : Proximal Femoral Focal
Deficiency (about 50 cm) and now I am 34 years old .I use brace and I havent had any pain till now ,but recently I had joint effusion in the knee of normal leg and it had made me sad as it had been taken for 5 months till now and Doctor said me there is a very tiny extra bone on the upper part of my knee and it makes pain ,I am not sure if can I remove this tiny bone through laser - theraphy or not ? so I want to know is there any chance for me to transplant my leg or is there any other way ?
My daughter was born without her right thigh bone and only 1 of the 2 lower leg bones. At 8 months, she went through a Boyd amputation of the small deformed foot on her short right leg. She was fitted with her first prosthesis around her 1st birthday and started walking at about 22 months. She is active and has few if any limitations. We are currently going through physical therapy for the first time to smooth out her walk. Her therapist has instructed her to use a cane in order to assist her in learning how to walk correctly.
We were noticing that dysplastic hips seem to be common in PFFD. (e.g. the top part of the femur moves up and away from the femoral head and the acetabulum). This can cause the top part of the femur to carve out a new hip joint higher than where it would be normally. We were wondering if anyone in their mid-twenties (or older) has had osteoarthritis develop who did nothing surgically and/or had something done surgically. We are wondering because there doesn't seem to be any literature regarding this and we are meeting with a surgeon in 2 weeks or so to to discuss options for our nearly 3-year-old.
Our daughter is now 30 months (just over 2.5 years) old and I feel like we've learned a lot about PFFD children's prostheses. I've written about some of it in the Your first meeting with a prostheticist section. But I thought I'd add a bit more.
I've added a module that allows members to upload images and documents as attachments to posts. Now when you go to create a post (Create Content, Blog Post) you will see at the bottom of the page a section called "attachments." There is a two meg limit on the size of all files and all images are limited to 640x480 in pixel dimentions. If that's not enough let me know.
I may also (if there is enough interest and I get a few seconds of time) add some more functionality that displays thumbnails of images in the posts as well.
I will be using this to post a document that shows some of th
