My name is Gabrielle and my grandson has PFFD. He will be 11 yrs old this year and is in the fifth grade. At first it was hard to deal with because he was also born with Pierre Robin Synodome. But we have all adjust quite well now. He is very active. He run every year in the Akron Kids Marathon which is 1 mile. The only thing right now is he want to ride a bike and we have yet to figure how he can do this. I read the article in People Magazine about Lily and Maya and how there parent have had to make adjustment for them which we have had to do also. I am very curious about the bike how did they make that adjustment. If anybody has a solution I would be very interested in hear it. I am very happy to finally find a web site dedicated to PFFD. It is such a pleasure to be able to talk to other people who is going thru the same thing as my grandson. Thanks Gabrielle
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Reply To bike question
Hi-
Lilly's mom here. We got her bike through a great organization called Ambucs. It is an AmTryke brand...Maya's dad (the other family in People magazine with us) actually adjusted the handlebars on both their bikes to move sincronized rather then "peddling style". The company has it set us as a scholarship or a donation system...there is a process, but it is worth it! Please check out that great company and look at what they have to offer. www.ambucs.com
-The Stiernagle's
BIKE
I would like to thank Lilly's mom for the information about the website. I found it to be quite useful. We have an appt for him to look at one of the bikes. Again I would like to thank you. Gabrielle
Hi
Some more comments here http://www.pffd.org/node/407
BIKE
I would like to thank Lilly's mom for the information about the website. I found it to be quite useful. We have an appt for my grandson to look at one of the bikes. Again, I would like to thank you. Gabrielle
pffd and pieere robin please contact me
my twin grandson also has pffd and pieere robin.
Debbie
djmetz@optonline.net
http://www.kylesportsforspecialkids.org