My name is Maria Wallace. I am the proud mother of a 4yr. old with PFFD. Her name is Nina and she is a Uni. with a prosthetic. Nina is also a twin. She's stong and determined. Although she was born with PFFD, it hasn't been an issue. I've had it easy.She is a wonderful child. Never complains. A few weeks ago, for the first time, she told me she wanted a real leg. Talk about a wake-up call. She wants to ride a bike so bad. So, here I am. This isn't about her riding a bike. I know we'll find a way. This is about support. This is about us knowing we aren't alone. THANK YOU SO MUCH.
Comments
BFFD class D
Hi
I just wanted to let you know that I was born (34 years ago) with BPFFD. When I "decided" it was time for me to learn to ride a bike like the rest of my friends, I was presented with a bike with hand controls. I know it sounds strange. However, I do know they exsist and are probably far more advanced now. The way I operated it is a bit difficult to explain. A "normal" trycicle was fitted with handle bars that connected to the peddles and I rotated the handles (sort of like rowing). I would be more than happy to answer any other questions.
Sara
hello
I am also a mother of a 22 month old daughter who has pffd in her right leg, she is a brilliant little girl, she has got her first prosthesis two weeks ago, she does not like it as she cant do all she used to be able to do she used to bum shuffle aroung the floor like lightening. It's an extension prosthesis she is using which is straight so she cannot either sit down or stand up herself which she hates.
What type of a prosthesis is your little girl using and how did she manage to get used to it?
Louise.
My daughter is three years
My daughter is three years old and has pffd in her right leg as well. She got her first prostehsis when she was 18 months old. It was also straight. Her second one was straight as well and she hated both of them. We would have to make her wear them. She could not walk on them alone. She had to use a walker or hold your hand. She got her third prosthesis this past February. It bends at the knee. It took her about a month to adjust to it but now she is all over the place and can keep up with her two older sisters. If you send me your e-mail I can send photos of her with her leg. She even likes to roller skate, of course she has to hold my hand because the wheels turn to fast for her. Let me know if you have any other questions.
Advice
Thanks for replying I sent you a private message well i think i sent it any way. Here is my e mail: louisekav2@hotmail.co.uk
Look really forward to keeping in touch with you. One more question how did your daughter manage to go from a straight leg to one that bend? Thanks again, Louise.
Walking with porstesis
Hi Louise
When Nina got Boots (What we call her extension posthesis), she wasn't to happy with it. As a matter of fact, she wouldn't use it for about 3months. We just gave her time and found a really cool push toy. We also talked a lot about boots and how cool it is. Now it's Ninas BestFriend. SHe loves Boots. We have to make her take it off when she goes to sleep. My only real advise I have, is to just give her time and a lot of love. It's like getting on a bike. Takes practice. As for the hole sitting down and standing up thing, she'll figure it out. I think at first, Nina used to pull herself up with the table or whatever was around. When her leg got stronger, she just started standing up. Now, when she doesn't have boots on, she hops. Hopes this helps.
Maria
DVD's are on the way.
Maria,
I plan to get the DVD's of McKenna's progress out to you on friday. I have 2 other families that also wanted copies, so I plan to ship them all at one time once I get the last address sent to me. Shipping via. USPS Priority mail they should reach in you 3 days or so, so keep an eye on your mailbox. Talk to you soon!!!
Sincerely,
Chuck, Karla, Dylan & McKenna