You are here

Little Romie's journey so far...

I have a two year old son, named Jerome that was diagnosed with PFFD in his right leg when he was still growing inside of me. I was 21 years old at the time and I was just excited to start a family.

When my husband and I first found out about his condition we went to the library and did some research. When I saw some of the pictures of legs of children who have this condition I wanted to cry because most of the children in the pictures were crying or looked sad it seemed so hard to deal with. I found out there werent many options for treatment and definitely no magic miracle that could just make it all better.

Even though I had seen pictures of other children with PFFD I didnt know what to expect and on top of labor pains i was very nervous. So when Jerome was born on November 23rd 2003 my whole family was there to support me.

When the doctors gave him to me he looked into my eyes and I looked into his bright brown eyes and I fell in love with him. Immediately all of my fears were gone. Those pictures I saw really had me scared, maybe because they were old pictures and were in black and white. The doctors told me his femur was fractured in the middle and they would have to take him to the NICU. After five days they put him in a pavlick harness and sent him home with us. His fracture fully healed after three months and we began to focus on the future.

Romie started walking at 18 months so the doctor added a one inch shoe lift on his sneaker. The lift was too heavy on him and he was more comfortable walking without it so we didnt force him to wear it. We saw numerous orthopoedists in our area (new york), none of which had ever treated a child with his condition. One of the orthopoedists had a $6000 prosthesis made when Romie had just turned 2.

The prosthesis was horrible. It was stiff, heavy, tight, and uncomfortable. Needless to say he never wore that either. He got around on his own two feet with a cute little limp because on his left leg he was walking on his whole foot and on the right side he only used his toes because thats where his right foot touched the ground. I didnt mind him walking this way but I wasnt sure if this way of walking could potentially damage his hip, spine or anything else.

In February we decided to go to shriners hospital in philadelphia for some advice because they have dealt with other children with his condition and probably knew what they were talking about better than the New York doctors. They offered us the same 3 options of treatment as I had read about in the library. They took the time to actually explain every little detail of these conditions so we could get a better understanding which was really heplpful. they answered all of our questions and were very helpful. They even made our son a new shoe lift made of a light cork/rubber material that my baby actually loved. He didnt even need to get adjusted to it he started running and jumping right away.

The new shoe lift actually has a 2 inch lift because the difference is greater than when he was 1 years old. Anyways we have to go back to Shriners this month we will be talking about which option of treatment we are going to go with. Every case is different and you have to go with what will work best for you. Whichever option is chosen has its positive and negative sides and there is no easy way through this. My son is very very active, smart, adaptable, handsome, happy and outgoing. He has a 2 and a 1/2 inch difference in femur lengths right now, a perfectly good foot, and some strong bones.

Even though a leg lengthening seems like it would be the best option for him, I am actually more interested in the partial foot amputation with the prosthesis because I dont want him to go through too much pain with the lengthening. Although this option sounds so scary and difficult I think it is the best option for my son because I want him to stay active and not be confined because of a weak fragile bone from lengthening. Also with all of the technology available I believe that he will be able to get a very functional prosthesis(They have great ones out there, you just have to do research).

I have also found that the most functional PFFD patients are the ones that have chosen this option, ie: etc. My husband is kind of against this option so nothing is going to be done until we get more info, talk to more doctors and agree on a plan of treatment. Until then we are going to stick with the lift. Our journey with PFFD has just begun. Romie has a bright future ahead of him and I'm going to teach him that no matter what happens he will get through it and be stronger than the day before.


Your little one will be as strong and as happy as you teach him to be. Remember he is completely able to be a perfectly function happy kid! We have a 9 week old and are dealing with a similar situation, only our little guy doesnt have a tibia in his leg so amputation is the only way. Keeep your head up, I know it can be so overwhelming.

It is a very tough decision to make. But, as parents, we each know what is best for our children. We have decided to lengthen our daughter's leg. We know it will not be an easy road but life is not an easy road. One day at a time, we will get through it. Our decision was based on talking to many doctors and families in similar situations who are either going through the process or have gone through it and their children are doing wonderful, living a normal life, i.e. I did want to say that the bone is not any weaker or fragile after lengthening. At first, it is soft, however with time and physical therapy, the bone strengthens and becomes as strong as any other bone. Lengthening has come a loooong way. Also, I think that all PFFD patients are very functional. Whether amputation is chosen, Van Ness or lengthening I do not think one is more functional than the other. The decision needs to be made based on what you think is best for your son but whatever you choose he will adapt and do great. That is the woderful thing about children -- they adapt to whatever it is they are given. No matter what the treatment, our children will be fine, they will get through it and as you say will be stronger every day.

Good luck,

hi Maria i am on the same road please read my blog "My best gift arrived on Christmas day
thank you


Dear mom of Romie

i just opened my blog My greatest gift arrived at christmas...please read it and email me if you can

thanks and good luck.


I am a male with PFFD. I was born in '72 and wore lengthening prosthetics from age 2 & 1/2 on...

I have more to tell you if you are interested...feel free to email me At

There is no easy decision to make here, regarding what to do with your son's leg... I actually had a large part in the decision myself.