My daughter is 7 years old with bilateral PFFD, missing balls/sockets and knee caps with short asymetrical femurs. I've been off this site for many years due to the craziness of life and hate that I did. My daugther has had hip reconstruction on her left side and one leg lenthening so far. She was also born with Arnold Chiari, which she had decompressed and a seizure disorder. I have been looking at the blogs and find them so comforting and resourceful.
My daughter has trouble riding a bike because of her short femurs, even more so with one femur shorter than the other. Brooke gets so frustrated and I would love advice from anyone on any new invention of a bike or something that might work for her. I have also been trying for years to locate others with PFFD and see if a group of us can start getting together. I thought I read a blog about it. Any comments would be greatly appreciated. I'm glad to be back with you guys and hopefully I can help too.
Comments
Hey there~ I am 34 years old
Hey there~
I am 34 years old with BFFD if there are any questions or concerns you would like address, please feel free to ask. In regards to riding a bike, I understand that problem! Have you looked into a hand controlled bike. Also, another fun great alternative is a Plasma car. My son (who does not have PFFD) recieved one for Christmas and I use it more than he does! :) Please feel free to write any time!
sincerely,
smo4474
Thank You
Thank you for the information. I have been looking on-line for hand controlled bikes and plasma cars, thank to you. I try very hard to build her confidence and give support to Brooke, but sometimes things are said at school or people hurt her feelings and I don't the best way to handle it. I comfort her, but she probably needs more then that alone. Any advice on how to handle the lack of education in others and keep her spirits high would be greatly appreciated.
JoAnn
bikes
hi,
My daughter who is 5 also has bilateral PFFD, class D. She has a hand propelled trike, in baby pink, of course :) and this had been great for her, its hard work some days but she is very strong in her upper body due to the way she gets around so this has been very helpful for her. We had to have the bike specially made but it has an adjustable seat and will last her for many years. i'm happy to send a photo if that might help. I would also love to get together but the majority of you are based in the states, living in the UK this causes a bit of a problem. If you need anything feel free to ask. Jo X
Jo
Thank you so much for the information I would love to get a picture of the trike. I appreciate your responding to my blog. It is great to gain a friend like you and help each other out. How can I get you my email address?
How to contact someone on PFFD.
to contact someone click on their name (username) and then click on "Write private message"
Trike
My email address is jcottengim@yahoo.com. I would love the picture of the trike. Thanks so much.
email address
Jo,
I figured it out. I didn't want to list my email address and have it showing up on the blog. I think doing it this way gives it to you in private, [removed: editor] , thanks again for responding to my blog. Is there anyone in the UK that you have been able to connect with?
JoAnn
[Editor: removed email address - to contact someone click on their name and then click on "Write private message" ]