You are here

11 yr. old boy bilateral PFFD. Looking for a friend with similar condition.

I am 11 years old and I love to skateboard.I am in 6th grade and have one happy sister.I am in love with Duke University and I realy want to graduate from there and become a pediatric orthopidic surgeon.I have a home page on matmice.com and my adress is matmice.com/home/stingrayman.I also have one dog , his name is mavrick.It snows a whole lot were we are so I bring him in sometimes.I have tons of freinds.I have been on two crusies both of them where norwegen cruise lines. I have been to 8 contries out of my own usa.I have been to Antigua,Puerto Rico,Camen Islands,St.Thomus,Jamaca,Mexico.
More about my condition,I have to have a shoe lift and I limp alot.I got made fun of in my earlier years in school accept in third grade the teacher never let anyone bully me in class or outside in resess.Well thats how it pretty much is now too my teachers are good to me.My mother found my disorder when I was born.It realy never bothers me that much though.I love the doctors at my clinic.They realy do alot for me and I appretiate that. PFFD does not make me disabled, it is just a challenge I have to overcome. I would like to meet another kid like me.

caleb isaacs.

Hi, Caleb! My name's Linda. I'm not a sixth grader, but I used to teach sixth grade (I loved it!). Now, I teach high school (I still love it, but I do miss sixth grade). I'm 30, and I also have bilateral PFFD. Like your mom, my mom found out about my condition when I was born. I've had a bunch of surgeries, and I've walked with a shoe lift just about all my life. Because of an ankle break a few years ago, I now walk with crutches and a leg brace. I don't use the crutches around my classroom, but I do have to use them at home if I take my leg brace off (my foot and ankle just aren't stable enough without it).

I also have a dog. Her name is Chula, which means cute or pretty in Spanish (that's what I teach!) She's a Shih Tzu, and she only weighs 6 pounds.

It sounds like you really like to travel. I do, too. I studied in Mexico City during college, and I moved back there for awhile after graduation. I traveled around Mexico quite a bit, and I think I'm familiar with more places in Mexico than I am in the U.S.!

Welcome to the site! I hope that you find someone your own age with BPFFD to talk to.

It seems like you are a pretty unique and smart boy. I want to congratulate you on looking for someone with a similar disability. I didn't think to do that until I was a lot older than you, but unfortunately, like yourself I did not have much luck finding someone similar. In fact, I think I had to wait for someone to be born since I have now met two people like me and both are more than 30 years younger than me. I'm sure there are older people too, I just have not met them.

When I was your age, I was pretty sure I was the only person in the world that looked like me! I really wanted to meet someone who at least was kind of like me and in 5th grade I had a teacher with an arm like one of mine. I was disappointed after I met her because she was such a typical adult and didn't even care when people stared. I hated the stares and just wanted to shop with my mom like my brother did....no one noticed them and no one watched them unless I was along. This teacher didn't even care that she couldn't hold a jump rope very well or that kids sometimes said she looked weird. Well, I cared a lot about these things that she insisted was no issue at all.

As I got older, I am afraid that I grew to be an adult person like my teacher because even though people still stare and kids ask lots of questions, it really doesn't bother me. It is kind of like being a superstar! Everyone seems to remember when they met me or saw me in the store. I tell my kids to smile and wave at people who stare just like a movie stair would. It is really pretty fun!

I have some baby photos and family photos on my blog so maybe your mom can help you find them. I wish you luck on your search and if I meet anyone your age with bilateral pffd, then I'll let you know.

Live like a superstar! Smile & wave as needed........

My son Trevor is 8 and has PFFD also. He wears a prosthetic but doesn't let it hold him back. He is a pretty active kid, plays baseball, swims, and lots of other normal kid activities. I'm sure he'd enjoy getting to know you. He has 2 older sisters that he enjoys playing with, most of the time. ;-) He has a lot of friends and doesn't seem to get bullied at all. Most of the kids that know him just ignore the fact that he has a disability, the rest stare for a while and sometimes ask him what he did to his leg. He usually just ignores the questions and they finally give up and go on with whatever they were doing.

You seem to have a great attitude. Keep it up!

Good luck,
Tim

Hi Caleb
I had no idea that this site was on the internet. I felt so touched reading everyones stories about this disorder, especially yours. I just so happen to have an 11 year old son in 6th grade that also has a short left leg! He is perfectly happy and does great at school and has lots of friends. He has had 2 leg lengthenings at the Shriners Hospital in Philly so far. One at 5yrs. (+2inches) and then one at 9yrs (+3inches). He has worn a shoe lift ever since he was walking at 18 months old. He walks around the house just fine without his shoe, however he really has to stand on his tip toes. He is active in Boy Scouts and is able to complete a 5 mile hike (even complaining less than the rest of the boys!) He doesn't play any team sports but does play sports with his younger brother Josh (9). We also enjoy to travel as a family. We just went on our first cruise to the Carribean last Christmas. We loved it. My husband, myself and AJ all went zip-lining in the jungle of Belize (our 9 yr old was too young to zip-line). So do you live in NC since you are a huge Duke fan? We live in Virginia Beach. We travel 6 hours to Shriners Hospital in Philadelphia for all of AJs appointments. They have been great since AJ was about 3 yrs old. Have you had lengthening?
Vikki

Caleb
I just read your post and was very happy to see that you are a Duke fan! I went to school at Duke and now I work at Duke hospital as an accountant. I have a little baby named Casey who has PFFD like you. I worry about her PFFD sometimes ... but mostly I worry that her father will make her a UNC fan! We will be taking Casey to the Shriners hospital in South Carolina in two weeks to schedule her surgery - so think good thoughts for us. In the mean time, let me know if you need any Duke gear - notebooks, backpacks, t-shirts, pens, whatever ... the store is right down the road!
Hope that you had a great Christmas.
Tanya

Your a great boy Caleb,

My son Ian Gabriel is in 2nd grade and he is nine years old. He wants to have friends like you too. His a unilateral PFFD. He is a good swimmer and love sports too. He has never been bullied at school because he says Hi to whoever stares at him. I have told him about you and he would like you to be his new friend. You can email him at ianboysuper13@yahoo.com

I am Ian mother
Rose A