I want to tell you about my E-mail friend Julia.
I am writing this short story to all parents that have emotional problems with the PFFD condition of their child. Dear parents, let your child grow up as it is born and let them decide for themselves what they want as treatment when they are grown ups.
Im am e-mailing to her for many years, She does not want to publish on this site herself but she allowed me me to tell her story.
the last time i submitted our story , we were a getting ready for fitting of ilizarov to our 4 year old . thankfully we are now one week after frame removal. its good to read peoples blogs when you are going through the process, its been the toughest 5 months of our lives but really worth it. our little boy legs are almost level and since the frame came of he has not stopped running and playing which is a beautiful sight. the hardest part has been the lack of sleep as our little man hated the splint on during the night . our medical team in dublin have been great for the whole process.
Is thers any one out there that has a child with pffd and club foot? If so could you please contact me as i would really love to hear from you,
We are thinking about going to America to America to see Dror Paley, and would like to know what we are in for also we have been told we can get her a prostesis that wont need surgery or one that will need surgery, we just really dont know what option to go for, Caoimhe is 21 months at the moment.
My son has outgrown a lot of pants, and I hate to "throw them out" I sewed the left leg so it is a few inches shorter. Nicholas has bilateral pffd, left leg. Does anyone have a young boy could use his "hand me downs"--pants. All are in excellent conditon, very gently worn. All the other clothing can go to family members and others but the pants! I'll be happy to send if they could have a new home.
I was just curious to see if anyone else that has undergone limb lenghtening is suffering from chronic pain? I'm only sixteen, but ive had about thirty surgeries. I had the Phoenix implant. Two of them actually, as the first failed. The Phoenix is an internal prosthetic which lenghthens via magnet. Anyway, i remain in constant, aching pain. Has anyone else whose undergone limb lenghtening, or any other procedure, suffered from such pain? how do you deal with it?
My daughter is nine years old. She is an absolutely beautiful child who was born with PFFD. She is a uni and it affects her right leg. We recently (the beginning of April) went through her third surgery. She has had 2 hip surgery's and the most recent was the Van Nes Rotation Plasty. We were blessed to have one of the physicians who is tops in this particular surgery perform it. Dr Krajbich is an absolutely fabulous doc!
When I was 5 months pregnant, we went in for the standard ultrasound to check for facial deformities, presence of organs, and measuring of the femur to check the actual age of our baby. At that appointment, we found out we were having a girl, and the technicians said everything looked fine. At my next appointment with my OB doctor, he told me that it looked as if her right femur was a little shorter than the left one or maybe bent. He ordered another ultrasound, and after that, he told us we could go down to Anchorage to have the closest specialists take a look with better equipment.
Dear Parents,
I remember visiting the site 2 1/2 years ago with so many questions in my mind as to what life our daughter would have considering that she has pffd in her right leg........ The personal stories of so many parents gave me hope that her life would indeed be beautiful if we give her love and let her live freely.
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).
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 !
Emily is doing good. We just came back from Shriner's In Lexington KY. She was fitted a few weeks ago for a new leg and we went down to get it. She had to stay a couple of days to go through therapy because her new prosthesis has a knee and they wanted to help her learn how to control it. She is doing well with it. Sometimes it bends on accident but at least she wants to wear this one as to oppose to the straight one. I will keep everyone updated.