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Bilateral PFFD Class D

Hi-

I am the mother of Lilly who is 5. She has bilateral PFFD class D. We have met one amazing family in Texas so far and would love to meet others with the same scanerio Lilly was born with. Would love to chat about the children and get to know eachother. Thanks and I am looking forward to being a part of this website...first time.

-The Stiernagle's in MN

Comments

Welcome to the group! You can find others with PFFD at this link http://www.pffd.org/find_someone_with_pffd.htm .

Cheers!
rar

Hi there, my daughter was born in 1994, with no left hip and short femur, Atkins D, now age 13yrs, She had her foot amputated in 1997, age 2 and had her knee removed and short femur and tibia fused to make one straight bone,in 2006, reading other peoples stories the knee option was never offered, to us earlier and l wish it had been,
We have had to do a lot of hospital changes to get the best standard of service and have a leg made where the foot does not come loose etc, Yasmin has never really spoke to any other children and adults with PFFD, she met one young girl and she couldn't deal with it, l think it is important for our children to speak and meet other children or adults like themselves,
l think because of the bulling yasmin has experienced since the age of 5yrs, she avoids thinking about her condition, she struggles to deal with it and she has cried, we both have, people are cruel and ignorant.
Now l have found this Website l will try and get my daughter, Yasmin to join. "who is an inspiration".
Michelle
Mother

Hi Jennifer~
My name is Sara Olson and I live in Michigan. Actually, a friend of mine just called me and informed me of your article in People. I joined this website just this evening in hopes of connecting with you and your friends in Texas. I am 34 years old, stand at whopping 3'11 and I too have BPFFD class D. I have to say, I have not yet met anyone with this same classification. I can only imagine, what it would have been like, how I would have felt if I had a friend as a child that was "just like me." What a blessing the girls have found each other. I have been a Motivational Speaker, speaking on topics such as anti-bullying, self esteem, and acceptance of one's self as well as other's. I have been blessed with wonderful parents that raised me to stand strong, stand tall and be proud of who I am. I can't say that it hasn't always been easy, I have been made fun of, I am stared at on a daily basis, and have had every crazy comment made to me under the sun! Let me tell you where I am now in my life. I am happily married and a stay at home mom to my beautiful 2 year old son Gavin. Growing up I faced so much adversity but I tried my best to overcome, accept and embrace my differences. I would LOVE to talk with you, talk with Lilly, offer any advice, listen, lend an ear if/when needed. My husband took it upon himself to put up a recent family photo on this site so I believe you will be able to see who I am. I look forward to hearing from you. I also have a million questions, so maybe we can help each other out! :)
Please feel free to also email me at
sspals3660@hotmail.com
Sincerely,
Sara Olson

Hi Jennifer!
I wrote to you on this blog just yesterday, but to be honest I am not sure if I sent it correctly. I apologize if this is a repeat email. :) My name is Sara and I am 34 years old. I have BPFFD class D. I would love to talk with you, I have not read but have been told about your recent article in People magazine. I just wanted you to know that I respect and appreciate you as a parent, as I know what my own mother went through when I was a child. I also would like you to know where I am in my life right now, in hopes of you sharing it with your daughter. I was told I would never walk. However, I not only learned to walk, I played sports, drove a car, went to college, began Motivational Speaking,have a wonderful husband and a beautiful 2 year old son. I have spent my entire life being made fun of, pointed at, I have had every crazy comment/question thrown at me that you can imagine. It would be wonderful to exchange stories and learn from each other. Again, I apologize if this is a repeat email. Sincerely,Sara

I sent this email today to the editor of the Mankota Free press hoping to get in touch with you...

Lilly's story in People Magazine (July 21, 2008) has prompted me to spend the day on the internet searching for information on Lilly and her family. Luckily, I searched long enough to fund the article written in your newspaper on July 6, 2008. Looking at the pictures of Lilly, I feel as if I am looking at myself...

You see, I am 56 years old and have PFFD. I never even knew what my disability was called until now.

When I was born in 1952, the doctors told my parents I would never live, then, I would never walk and they might as well put me in an institution and forget about me. They did not, thank goodness. I have had a very "normal" life--went to regular school, graduated from college, hold down a full time job, am involved in my church. I have been married for 30 years to my best friend and we have a 24 year old son who is 6'4" tall (I gave birth to him by C-Section after staying off of my feet for 7 1/2 months). I have really had a charmed life and my "disability" has never gotten in my way. I have never had any prosthetics and only use a wheel chair for "long" jaunts such as the mall or an amusement park. I am 4'2" tall and I can even drive a car.

I tell you all of this so that perhaps you could pass it on to Lilly's parents so that they (and Maya Albert's parents-the other little girl in the People article) can REALLY know that everything with their little girls will be absolutely fine. I have attached a picture so that they can see what a grown-up with PFFD looks like.

My email address is sunshine929@comcast.net if they would like to get in touch with me for any reason. And if not, that is ok. Just please pass on my prayers for them and for Lilly that God will bless all of them with lots of hope and peace.

Thank you,
Sheila McLaughlin
Port Charlotte, Florida

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Hi Jennifer. I was hoping to get in touch w/Maya and her family. I'm 32 with bilateral PFFD and work in the social work field in Austin. I have lots of personal and professional experience working with people with different disabilities. I've never met anyone else with PFFD and thought maybe I could be a local resource for Maya's family. They can contact me here on the website or at jamie_1976@hotmail.com. I'd be more than happy to answer any questions you and your family might have too. I have had a wonderful life and have a very positive outlook overall.
Thanks!
Jamie White

My daughter who is now 8 yrs old also had billateral PFFD. We are interested in joining everyone for a retreat. We would love to gain some friendship and help each other. I understand MN is an optional for the retreat site. If the retreat is planned, we will join. I also want to put it out there for anyone who lives closer to Ohio and the surrounding states that can't travel to MN, maybe we could set up another retreat for those who can't make the MN trip. We live in KY.

Yes that would be awesome to see the pics, see when i was btw 1-3yrs old or so very young i had like tow surgeries where they tired to make my bone take but it did not work- see i am missing the smaller bone in my leg , i have no hip socket and my femur bone is smaller, have you heard of HANGER PROSTHETICS?? They were able to make me a leg brace to where i am able to get around though when i was younger , kid i was able to get around almost just as much as the others but now that i am older i am limited but not contained, i get around just not long distances... something to check into, BUT DO NOT GET A KNEE BRACE, that was my first brace and it shoved my bone up in my leg and i almost had to get it amputated........... the doctors where not aware since u kno 1 out of 50,000 get pffds so been going to HANGER PROSTHETICS SINCE THAT HAPPENED WHERE THEY ARE PROFESSIONAL AND NOTHING LIKE THAT WOULD HAPPEN EVER AGAIN. i BEEN GOING THERE FOR ABOUT 20 YRS.
my personal email is leavina@hotmail.com