Personal Stories

Thanks for the prayers everyone, Tom has been in and screamed going under and screamed coming out!, but we have finally got a proper diagnosis and treatment plan.
Toms right hip isnt formed at all!, and his femur hasnt grown so he shall continue to wear his prostesis, i have had my tears that the miracle hasnt happened, but also im so pleased he wont have to go through the hospital visits that he is so desparatly terrified of.
As i have said to my family, please dont be sad as Tom copes fantastically well, and enjoys life the way he is, and as long as he is happy , so are we!
Tom is an amazing child that teaches us something everyday, We all love him so much and i think if truth is known, its only us that sometimes has upset thoughts and bad days

Hey all,
we leave tonight to travel to the city for toms appointment tomorrow morning,we are staying in a hotel, id like to say im excited about staying at a hotel as we never do!, but the truth is im worried sick and feel sick to go with it,can anyone who reads this just say a little prayer for Tom and us for while hes under general anestetic, if they get time, thanks a lot
love and best wishes Sally-ann
x

My first and only child Kalyn was born on 03/01/06. I was told during pregnancy that my daughter was a dwarf and or had a broken leg. It made for a very emotional pregnancy. My little girl was born and taken from me immed. and put into "Baby ICU" for 8 days. No one could figure out what was wrong with her left leg..we were sent to Shriners and within a short amount of time they diagnosed my little baby with PFFD in both legs and Fibular Hemimilia in both legs as well. She also has 4 toes on each foot (it made for an adorable birth certificate). I am writing this with tears in my eyes bec/ she is now 3 months old and the bigger that she get the more real her condition becomes to me. I just dont understand how I am suppose to teach her how to be ok with this since I dont even know how to be ok with this..I felt like my husband, myself and my family were the only ones going through this until I found this site. I am so happy to have read the letters from so many. I am so worried that she is going to have a harder life than other kids. I know that I should not say this is not fair since life isnt fair but it just isnt. No child should be born with problems..I would really like to be in contact with others that have children that have PFFD and children that have grown up with PFFD. I am having a very hard time with this. I dont think that I will have any other children bec/ I am afraid that he/she will have the same disorder that Kalyn does. She is the love of my life and I will do anything for her. She is my little angel. "God only gies special babies to special people that can care for them".

Hi hope i find everyone well,
The date for Toms hospital appoinment is approaching the 8th June, i was just wondering if anyone had gone through an Arthrogram at all, and if anyone could let me know what to expect, and outcomes?

Hi my name is sonia and i am the mother of a beautiful little girl named kiara. Kiara was born at full gestation and we found out that she was missing a toe the day she was born christmas day December 25 of 2000, to our surprise Kiara wasn't just missing a toe she was also missing her fibula in her right leg and she had a small bowing and also a shorter femur. Since then I did all the research i could, we visited Children's hospital in Boston and we drove up to shriners hospital in Springfield. We opted to have physical therapy at home and kiara started to walk with a shoe lift at age of 16 months old, She had a small surgery at 11months old to release her tendon and again at age 3. She is now 5yrs old and after meeting with several doctors we decided to do her first leg lenghtening of 8cm. Its a road that its hard to walk on but so far kiaras leg has grown almost 2cm, she has pain and pin care is far from fun...

Hello! I was born with PFFD affecting my left leg. I was also born with my left arm ending at the elbow and my right arm ending below the elbow with two fingers. I welcome comments/questions from experienced persons with PFFD as well as youngsters and parents. I do not easily offend and no question is too personal.

We just wanted to let people know about the Plasma Car, a ride on toy for kids. It's perfect for kids that have difficulty pedaling other ride on toys. There are no pedals and no batteries. Kids propel the car forward by swiveling the steering wheel back and forth. It drives on a smooth, flat surface. Our 3 year old daughter has bilateral PFFD and wears a prosthesis on one leg. My husband made some adjustments to a tricycle to see if she could pedal it with one foot, resting the other leg on a stationary rod. However, it has been difficult for her to do by herself at this point. She loves to play outside and we had been searching for a ride on toy she could control by herself. I saw the Plasma Car in a toy catalog and got it for her birthday in February. She loves it. She can get on by herself, put her legs out straight in front and start turning the wheel to make it go zooming down the driveway and around in circles. It is a wonderful ride on toy for any child that has a difficult time with pedals since you control it completely with your arms. All kids love it. I just noticed that Target is selling it online now. You can search the web to see pictures and even a demonstration of it in action.

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.

MY SON IS THREE AND A HALF AND HAS PFFD IN HIS RIGHT LEG. HE HAS A SPLINT THAT HELPS HIM WALK AND APART FROM HAVING A SLIGHT LIMP YOU WOULDN'T THINK THERE WAS ANYTHIN WRONG WITH HIS LEG. THE HOSPITAL HAS ADVISED US TO AMPUTATE HIS FOOT FOR COSMETIC REASONS CAUSE HIS FOOT WILL GET TO BIG FOR HIS SPLINT BUT I CANT GET MY HEAD ROUND BEING THE ONE TO TAKE AWAY HIS FOOT. HIS RIGHT LEG IS FIVE INCHES SHORTER.I WOULD REALLY APPRECIATE ANY ADVISE ON WETHER YOU DECIDED TO AMPUTATE OR LENGHTEN YOUR CHILDRENS LEG. AND IF YOU DECIDED TO GO WITH LENGHTENING HOW MUCH PAIN WAS YOUR CHILD IN. THANKS. MY EMAIL

My son Ethan (almost 2) will be going for his first visit to see Dr. Paley in June. I have recently been talking with some individuals on the Yahoo site who have given me a bit of advice on what to expect, think about, etc. for this visit. However, I am still hoping that others will be able to give me advice as well. If anyone out there can provide information I would appreciate it.

Also, later I will be posting some information on flight assistance for children who need to fly for their medical treatments.