Kyle has bilateral pffd class (d )with no hip joints. At 4 he is only 30" tall and 25lbs. Kyle has other disabilities called pieere robin syndrome- he was born with a under developed lower jaw-cleft palate, ear tubes. Kyle has had 2 jaw distractions already. Kyle has has 8 surgeries already and Kyle also has a trache and a g-tube. With all of his issue's he is always happy and always playing sports, he dosnt sit still for 1 minute.
I am looking for another family that might have a similar diagnosis? WE HAVE BEEN SEARCHING FOR 2 YEARS? I know thee has not been a conference on PFFD yet, but I wanted to reach out and get some response. We have started a sports based program for children with special needs on a sports based level. Kyle plays all sports and roller skates.
Kyle's web page
http://www.kylesportsforspecialkids.org
djmetz@optonline.net
Debbie
Twins Keith & Kyle born 3/30/04.
Comments
your son...
My daughter brooke was also born with BPFFD also with no hip joints...my question is...does you son stand or walk yet..how old are your twins...sorry i would use a question mark but my keyboard is leaving É that instead...go fig.
Me too
I have bilateral PFFD with no real hip joints. I guess it's mainly the muscles and tissues that are keeping everything together. I started walking, my parents tell me, at around 18 months. But I'm not sure how accurate that is. I wear an AK prosthesis on one side and just have a shorter leg on the left. I'm 4'8".
I am 34 years old, and stand
I am 34 years old, and stand at 3'11. I was born with BPFFD, Pierre Robin and Unusual Facies Syndrom. It sounds like Kyle is already a very active, energetic and strong little boy who does not and WILL not let anything stop him!! If you have any questions or want to talk please feel free to contact me.
Sara