Hey. My name is Staci and my son is 2 with PFFD- right leg. He does not have tibia hememelia but I have read about SEVERAL patients of Dr. Paley with the same condition that he is treating. We were given the option of amputation ONLY and did not agree. We then found Dr. Paley/Standard and I am very thankful!!! Best of luck!! Staci
Hi Jenna. My daughter does not have tibial hemimelia but I know for a fact and have met children with tibial hemimelia that are having lengthening done in Baltimore at the Center for Limb Lengthening. have you gone there and consulted with those doctors yet?
hi my daughter was born with tibia hememelia in 2002, she wasnt even 2 hours old before they stated amputation was only option, we took her to shrinners in chicago and they stated the same both me and my husband wouldnt accept this, on a trip to visit my family in nyc i came across a doctor who could see my daughter and who followed llaz limb lenght procedure,, he changed our world there was something they could do and she would walk it took 2 yrs but we finally got the right answer she is considered a mild case with no hip or knee problems absent tibia below the knee and only four toes on her foot she nows wears a prostetic so she can walk and run and all a 4yr old does until we decided what to do since we live in the midwest we were hoping to find a doctor out here and finally came across minnisota limb lenghting center we will be traveling soon and hopefully she completely qualifies for limb lenght would love to talk to people w/tibia hememelia esp after surgery can possibly give advise thanks
Hey. My name is Staci and
Hey. My name is Staci and my son is 2 with PFFD- right leg. He does not have tibia hememelia but I have read about SEVERAL patients of Dr. Paley with the same condition that he is treating. We were given the option of amputation ONLY and did not agree. We then found Dr. Paley/Standard and I am very thankful!!! Best of luck!! Staci
My daughter also has tibial
My daughter also has tibial hemimelia. We were only given the option to amputate. She also has a short femur and does not have a good knee or ankle.
Your baby
Hi Jenna. My daughter does not have tibial hemimelia but I know for a fact and have met children with tibial hemimelia that are having lengthening done in Baltimore at the Center for Limb Lengthening. have you gone there and consulted with those doctors yet?
Maria
tibia hememelia
hi my daughter was born with tibia hememelia in 2002, she wasnt even 2 hours old before they stated amputation was only option, we took her to shrinners in chicago and they stated the same both me and my husband wouldnt accept this, on a trip to visit my family in nyc i came across a doctor who could see my daughter and who followed llaz limb lenght procedure,, he changed our world there was something they could do and she would walk it took 2 yrs but we finally got the right answer she is considered a mild case with no hip or knee problems absent tibia below the knee and only four toes on her foot she nows wears a prostetic so she can walk and run and all a 4yr old does until we decided what to do since we live in the midwest we were hoping to find a doctor out here and finally came across minnisota limb lenghting center we will be traveling soon and hopefully she completely qualifies for limb lenght would love to talk to people w/tibia hememelia esp after surgery can possibly give advise thanks