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Personal Stories

My best gift arrive on Christmas day...

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...

Adult with PFFD

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.

Plasma Car - Ride on Toy

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.

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.

MY SON

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

Ethan's Visit to Dr. Paley - June

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.

Two year old with Class A/B PFFD

Hi,
My son has class A or B, a shortened left femur with a fairly stable knee and good ankle. He has an expected discrepancy of 6 to 7 inches at maturity. We have been told he needs a hip surgery before he turns three years of age to stablize his hip. Then have three separate leg lengthening surgeries each probaly three years apart. We are now battling with our insurance company because they want us to stay in NY state and go to doctors who perform one or two of these surgeries per year, and not often on children with PFFD. We consulted with doctor Herzenberg at the Leg Lengthening center in Baltimore who does 3,000 of these sugeries a year, and really feel much more comfortable with him.

Toms hospital appointment

Well hello everyone, havent posted for a very long time on this /or the old site.

Just to let you know Tom has turned 4 and doing very well with his Prostesis extension, he can do anything and everything(especially things he really shouldnt be doing).

We went to see the docs for our 6 monthly and there taking Tom inunder GA to do an Arthrography of his hips,, which apparently is a easy procedure to see whats happening.

HAs anyone else been through one of these?
hope everyone is well
Oh i intend to write a personal story at some point but at the moment my newborn is making it rather difficult!!!

Devon Angel

My granddaughter Devon Angel was born in October 1998 with PFFD. She was born in a suburb of London. She also had a hole in the heart (which has now closed up). After spending two weeks in Neo-Natal, she was allowed home with my daughter and her partner. Those early days are cloudy for us all as we were all in a state of shock and couldnt understand the complexities of her condition. My daughter is a dancer and Devon`s father a healthy, sporty footballer. How could they have a baby with half a leg? It was beyond our comprehension and filled us all with dread and confusion.
From the very beginning Devon was a fighter. My first glimpse of her lying naked on the "open" cot in Neo-Natal was one of astonishing emotion. With tubes everywhere, a tiny bonnet on her head and a white covering her lower limbs it was hard to imagine anything being wrong with her. She looked so vulnerable. I promised her I would watch out for her and keep her safe - I wanted to put everything right.

Hip Surgery

My husband and I have some questions for the group about hip surgery (actually femoral osteotomy). Our 3-year old daughter, Allison, has bilateral PFFD. She has a short femur in her left leg (Paley Type 1b) and no femur or hip socket in her right leg, so her right foot falls slightly below the level of her left knee. She wears a prosthesis with a hinged joint on her right leg, and she walks pretty well.

Allison has never had any surgery, but her doctor recently recommended a valgus osteotomy to correct the coxa vara in her left femur (her better leg) and to derotate. We'd like to get some feedback from others who have had experience with this surgery. Allison is not a candidate for lengthening, so the purpose of the osteotomy is entirely to improve her walking ability (i.e., not in preparation for lengthening).

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