Personal Stories

Here are a few more pictures of me when I was very young.

This one I think was on Easter, and I think I must have been around four. My sister was kneeling so you can see how tiny I was.

The last time I posted, we were still looking at treatment options for my son Kinnick, who is unilateral PFFD in his left leg, with a good hip, very short femur, and absent fibula. That was over a year ago.
Well, we have since chosen a Symes amputation and prosthetic for Kinnick. He had surgery the week of his first birthday in March at Shriners Hospital in Minneapolis, MN. He got his prosthetic in the middle of April. He started walking a few weeks ago right at 16 months! We are so proud of him and are amazed by his progess everyday!

Kyle has bilateral pffd class (d )with no hip joints. At 4 he is only 30" tall and 25lbs. Kyle has other disabilities called pieere robin syndrome- he was born with a under developed lower jaw-cleft palate, ear tubes. Kyle has had 2 jaw distractions already. Kyle has has 8 surgeries already and Kyle also has a trache and a g-tube. With all of his issue's he is always happy and always playing sports, he dosnt sit still for 1 minute.

Wow. I am kinda overwhelmed by finding this site! I never knew the name of my condition before my husband brought home the People article about PFFD, much less that there were so many other people with the same thing.
I am 30 years old with, I guess, bilateral PFFD. My right leg does have a kneecap and a very short femur. I only had one surgery when I was 8 to remove part of the growth plate in my right knee so that leg wouldn't grow TOO much faster than the left (where there is no joint or femur).

I did introduce myself in the general forum, so I will try not to repeat myself too much. Like I said, I was born in 1948 and am bilateral.
I also was born with only one arm. There is just smooth skin where my left arm would be. I also only have four toes on each foot.

Here is a picture of our son. He is the light of our lives!

Shawna & Charles

Hi, my name is Shawna. My son Jake is 2 months old (born on May 28th, 2008). He was born with unilateral PFFD of his right femur. My husband and I learned of his diagnosis back in January 2008 when I was @ 20 weeks pregnant. We went through a whole slew of emotions and had so many questions, but most of all we just wanted to meet our little man. Well, he is here and he is wonderful!

My name is Marcus Guenther, i am a 21 year old male who has bilateral PFFD and lives in Ohio. I never knew that anybody else in this world had the same thing i did until on of my friends mom's saw the article in the People's Magazine and they told me about it. I enjoy the outdoors, especially cutting grass. I work about 50 hours a week and i am about ready to graduate college. I drive a car with hand controls. I also have a twin brother who is 6 foot 3 inches and does not have PFFD. I have always been treated the same as any other person in my community.

Hi, my name is Kristen. My son Daniel is 11 months old and was born with unilateral PFFD in his right leg. I have never posted to this forum but I have found it to be so invaluable and look at it on a regular basis. This week I put together a blog for Daniel so that friends and family and other interested people can track Daniel's progress. I thought it would be worthwhile sharing it with the members of this blog as well so please feel free to take a look and forward it on to anyone else who may be interested.

My name is Gabrielle and my grandson has PFFD. He will be 11 yrs old this year and is in the fifth grade. At first it was hard to deal with because he was also born with Pierre Robin Synodome. But we have all adjust quite well now. He is very active. He run every year in the Akron Kids Marathon which is 1 mile. The only thing right now is he want to ride a bike and we have yet to figure how he can do this. I read the article in People Magazine about Lily and Maya and how there parent have had to make adjustment for them which we have had to do also.