Hi Everyone! :)
My name is Megan Miner. I am 19 years old and i have PFFD, but my twin sister Katie doesn't. I have no idea what class i am, but i definitely know i have PFFD! lol! My mom has always been very supportive and always treated me and my sister as equals. I was raised just like any other kid. My mom is pretty much my hero. Im a VERY outgoing person who LOVES to have fun with all my friends. Everywhere i go.. people know me, call out my name and give out hugs!
I can walk... but i have a wheelchair only for school, the mall, and long distances.
In Elementary School, Middle School, and High School i was very involved in Theater and did the plays and musicals. I was on my high school's colorguard team for 3 years, and for two of those years i was Colorguard Captain.
My passion is singing. I've been singing since i was in kindergarten pretty much, and fell in love with it. I love singing showtunes, jazz, and opera type music. I've been involved in countless Honor Choirs and have gotten a few awards for singing including a nomination for the Kennedy Center Award for vocal achievement. Hopefully one day, i'll win a Grammy! haha!
In the fall I'm going to Shepherd University for Family Studies and Social Work...or maybe Disability Services/Counseling...lol i havent really decided what i want to do yet :)
I was very excited to hear about this website and I'm looking forward to hearing from you!!
:)
Comments
Hello
Hi Megan, welcome to the website. I too have bilateral pffd. Do you use any prosthesis or had any surgeries in relation to your pffd? I ask out of curiousity, i know you did say you walk, i wasn't sure if it was unaided. I have read another post on here with twins, one with pffd, one without pffd.
You sound like you live a very active life, not letting anything stand in your way, the best way to be, just like any other 19 yr old.
I'll keep an eye out for the Grammy!
Take care,
Dave Bailey
Reply to Megan
Hi Megan-
Our daughter Lilly has PFFD too. In her case it is bilateral class D so she is missing her femurs (or there may be just a tiny nub there) and her fibluas and knees...just has her tibia connected to cartilage in where a hip socket would be. She walks too and also has a wheelchair in school and out shopping with me. She is six years old.
It sounds like you have accomplished quite a lot at 19 and you should be so proud of yourself. Not a lot of people do all that in their teenage years...you sound goal oriented and mature for 19!
The Alberts are a family I am sure you'll hear from (there on vavation now). They also have twin girls Kirsten and Maya and Maya has PFFD class D where Her twin is "regular size". They are six years old as well...it will be great for Natalie, their mom, to have someone else with twins in the same scenario.
Great you became part of this site...would love for you to email directly bjstiern5@bevcomm.net so I can share photos of Lilly.
-The Stiernagle's
Hi Megan
My name is Zach, and I'm sixteen. Glad to find another kid with pffd. So, you use a lift, then, I assume? Have you had lengthenings? Any surgery? I've had basically evrything...grafts, lengthenings, and now an internal prosthetic. All with Paley. I live in upstate New York, like two hours north of syracuse. Where do you live? Cool to hear you're into theatre, as well. i love it too. As long as I'm on stage, I'm happy. You know the feeling, obviously. So, you'll be moving out soon, then? Nervous? I'm sure you'll be fine. We're a resilient bunch. Drop me a line if you'd like to talk. My e-mail is littlerufa@yahoo.com. Talk to you later.
-Zach Rufa
Hi!
Hi Zach it's nice to meet you. To answer your question, no I don't use a lift and I haven't had any lengthenings. My surgeon, Dr. Tosi at Childrens in DC was against them for me. I've had two surgeries, both to stabilize my feet in a plantar grade position (so I can stand flat on my feet). The first one was an initial correction, the second one was just an adjustment. I don’t wear prosthetics, I wear AFO braces on my legs to keep my muscles in place. I can walk, but it’s more like a penguin waddle, lol. When I was 5, me and my twin sister (who doesn’t have pffd) were playing in the basement and she taught me how to walk with a doll stroller. We surprised my parents and my doctor.
I live in Damascus, Maryland. I’m moving out August 14th. Am I nervous? Yeah, Of course I’m nervous. Who wouldn’t be. I’m really nervous about being in a new atmosphere, and a new state, all by myself. But like you said, I’m sure I’ll be fine. Thank you for your kind words J
Yeah oh my gosh I love doing plays and musicals. I only did one in high school, but I love theatre. It’s such a rush. So, have you started looking for colleges yet?