Personal Stories

Hi everyone,

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.

Hi,

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.