Personal Stories

Hi My daughter is 21 has PFFD (Left leg) She delivered a beautiful boy on Feb 27. Just to let everyone know, everything went perfect. She went thru 38 hrs of labor, but she handled everything so well. Other than the loooooong labor, the delivery was natural and my grandson was perfect. He is growing and growing. I forgot how fast they grow. Thanks to the people that wrote to me with encouragement.

MOMMALOU

My daughter, Olivia (she turns 4 in June), has her first lengthening surgery scheduled for May 9th. Her surgery will be performed by Dr. Davidson at Children’s Hospital of Philadelphia (CHOP). A year ago, during a check-up with Dr. Davidson, we were told that a pin left in her hip/upper femur (from her super hip surgery) needed to be removed prior to lengthening.

I am in really desperate need of finding someone who has a daughter with unilateral PFFD that has already been through potty training. If anyone can give me any advice I would really appreciate it. Hope everyone is doing well.

It took about four weeks to adjust to the new leg, but she is walking on her own without holding onto anything. We have waited for this for so long.

I'm 31 yrs old and my parents decided on amputation of my right leg (severe PFFD and severe tibia/fibula marlformation). There was really no other option on that side because of the severity. I wear an above knee prosthesis and function just fine (I have a 5 year old and a 4 month old). I have PFFD also on the left side, but only have a short femur, the lower part of my leg is pretty much OK. I did not have limb lengthening on that side (because there was really no necessity, since there was no other leg to match it).

Hi-

I am the mother of Lilly who is 5. She has bilateral PFFD class D. We have met one amazing family in Texas so far and would love to meet others with the same scanerio Lilly was born with. Would love to chat about the children and get to know eachother. Thanks and I am looking forward to being a part of this website...first time.

-The Stiernagle's in MN

Hi! this is my first time on this web site and i think it gives those of us with PFFD some great insight. I am 23 years old and was have bilateral pffd. I have not actually ever talked to anyone that has pffd. I live in Mississippi so if someone with pffd would share there story and information, i am actually going through the process of having a new prosthesis built and there are so many new things available.
Thanks, Hope

I have checked into this site hundreds of times over the past year and a half. I have read many stories and made contact with many people and was helped along this journey with PFFD. I always imagined how it would feel to announce that my baby was finally able to walk, well, it is true, MY BABY IS WALKING!!

Hi guys,
Emily is trying to walk on her own with her new prosthesis but is still struggling. I was just wondering if there was any families taht lived close to Huntington, WV that has achild with PFFD or that goes to Shriner's in Lexington, KY that we could get in touch with. Hope to hear from someone soon.

For your information a group was created on Facebook especially dedicated to the PFFD Syndrome.
Here is the link: http://www.facebook.com/group.php?gid=9050453945

See u soon !