I just opened a website for the children's book I wrote: Imagine...Amazing Me!
The book has photos of children with limb differences living a fun childhood and includes several of the children from this site!
The website is www.imagineamazingme.com. I set it up so people could see what is happening with the book and also, there is a page to print to order the book. Money is being donated to organizations that support children with limb differences.
I am new to this site. I am a 64 year old married woman and because I have no computer, my niece is doing the handywork for me. I am hoping to find someone to correspond with who also has bilateral PFFD and who is close to my age to exchange ideas. I am so glad to have found this site and look forward to hearing from new friends. I also am here to tell all of those families with PFFD that one my age is still going strong and been blessed with an extremely happy and fulfilled life.
harrist
My husband and I have a video on youtube. If you go to www.youtube.com and do a search for 'Joseph Merrick', we're on the first page. You'll see little hands on a piano. We play under the name 'o my machine'.
If anyone has any information on resources for a child with pffd please let me know. My son had class c pffd that will require a new prosthetic each time he out grows one. He will also require surgery. We have been turned down for medicaid twice and are currently awaiting for word back from social security. We are looking into the shriners hospital. any suggestions?
I have to give many many many thanks to the Shriners... both in Greenvile and in Tampa, Florida (yes, you guys... Ron Gingras, Debbie, Danny, Fred... all of you). I grew up there and those people celebrated my every accomplishment. I remember when I was a little girl I brought my roller skates with me to the hospital and the staff stood outside while I skated around. In the hallways, everyone says hello. They really treated me like a was special there. It wasn't just that they made me legs... it was a whole experience.
This is Jenny, Lilly's mom. Since we are talking about convention, I thought I would pass along some links to a great facility in Stewartville, Minnesota. This is where Lilly attended National Wheelchair Sports Camp this summer and had a blast. The people here are so amazing the the scenery is great too. Check out the links to see it.
Thank you to everyone who sent us emails or left comments of support on Daniel's blog (http://danielrigby.blogspot.com). It really means a lot to us.
Today for the first time, Daniel experienced what it is like to have two feet on the ground! He tried on his first prosthesis which will be ready to take home at the beginning of September.
Sami is now 4 years old. She is as active as just about any other 4 year old girl out there. She has class-D pffd, affecting her left leg. She participates in gymnastics (she can do a cartwheel now...but loves the uneven parallel bars the best). She also LOVES to swim, which has to be really good for her, right?
Our 6 month old daughter, Brooke, was born with BPFFD, and complete absence of both arms. She is missing her femur, fibula, knees, and both hips..as well as both her pinky toes. Other than the "obvious" Brooke is very healthy, and bright...but i'm biased....is anyone else missing their hips?? and how is walking??
