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My Little Angel....

My first and only child Kalyn was born on 03/01/06. I was told during pregnancy that my daughter was a dwarf and or had a broken leg. It made for a very emotional pregnancy. My little girl was born and taken from me immed. and put into "Baby ICU" for 8 days. No one could figure out what was wrong with her left leg..we were sent to Shriners and within a short amount of time they diagnosed my little baby with PFFD in both legs and Fibular Hemimilia in both legs as well. She also has 4 toes on each foot (it made for an adorable birth certificate). I am writing this with tears in my eyes bec/ she is now 3 months old and the bigger that she get the more real her condition becomes to me. I just dont understand how I am suppose to teach her how to be ok with this since I dont even know how to be ok with this..I felt like my husband, myself and my family were the only ones going through this until I found this site. I am so happy to have read the letters from so many. I am so worried that she is going to have a harder life than other kids. I know that I should not say this is not fair since life isnt fair but it just isnt. No child should be born with problems..I would really like to be in contact with others that have children that have PFFD and children that have grown up with PFFD. I am having a very hard time with this. I dont think that I will have any other children bec/ I am afraid that he/she will have the same disorder that Kalyn does. She is the love of my life and I will do anything for her. She is my little angel. "God only gies special babies to special people that can care for them".
Heather Cords

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After staying up most of the night with our little one I really got to thinking about this web site. I called my mother to tell her about it so that she could read some of the stories that are in here. I am so happy to have been able to be a part of this amazing website. My family (mom, dad, brother, sister in law and many more) have felt like we have been through the ringer with Kalyn's condition and it is so nice to for the first time to feel like we have others to talk to about Kalyn's condition, that are going through or have been through the smae thing or close to. I wanted to say thank you to everyone for putting their stories out there for others to read/see. It has been a real comfort to me and my family.
Thank you,
Heather Cords

My angel, Myah was born in May with PFFD affecting her right leg. I read your blog and I am going through the same emotions. It is so hard right now not knowing what her future will hold or at what pace the leg will grow. Her first Doctors apt isn't until July 13th. We are so anxious. I have so many questions. Sorry I don't have any advice, but know I am going through your same pain and would love to chat in the future. Your daughter is beautiful.



Heather - my grandson is now 2 years old and has PFFD in the left leg. His femure is about 75% short. I went through the same range of emotions (we all did) during the pregnancy with the uncertainty of what to expect. (Doctors can say horrible things - even they don't know what to expect.) I know what you mean when you say it appears more "real" the older she gets, but you will find that Kalyn will adapt just fine. Damian sat up at 5 months, and crawled shortly thereafter. He found his own way to be mobile. Damain visits Shriner's in Minneapolis 2-3 times a year now for his prosthesis. He calls it his "helper" and is doing fine. (He got his first one at 9 months.) I'm sure there will come a day when he'll have all the questions. My daughter opted for no amputation or rotation - even though the doctors like to push that issue. Technology has so many things to offer and we could never imagine taking a part of him away like that. As time goes on, gather all the information you can before making any major decisions.


Dearest heather,
I am writing this feeling your pain, I have a dear little son called Tom, He is4 years old and had class d in his right leg, i remember being told at 39 weeks that he had a broken leg in the scan , so i was sent to a big hospital n LOndon, where thwy told me he had deformitys, but couldnt tell me how bad, they then offered me a termination at 39 weeks??(that hurt more than them telling me , i remember shouting and screaming and trying not to think how they aborted a full term baby!
wHEN Tom was born i knew he was special,, just like his older brother whom has mild autism.
We were told he wouldnt sit up , wouold be in a wheelchair all his life, he is now jumping climbing even running in his own way, and he has NEVER asked why he was born like that, it hurts me more than it hurts him, the kids he goes to school with looked at his leg a few times and my heart sank ,, they now try to football tackle him on that leg as they know the prostesis wont hurt!
I know this isnt the same as your beautiful baby, but i just need to tell you,, it effects us more than them, we deal with it a lot worse than they do, Tom has never said he cant do something ,always gave it a damn good try.

I also want to let you know about a friend of mine and his daughter whom is about 14 now and has pffd bilateral, she never had prostetics , just moves around with her two legs,, i remember the first time i met her ,,She was swinging from a rope in her house and getting around better than me! And her dad, well he is an inspiration to me, hes fab!
she has a wonderful nature and dosent let ANYTHING stop her,, goes to mainstream school and is one of the happiest children (well near adults ) i have met!
anyway if you ever want to chat about our gracious gifts from god, oh and dont forget ,, those angels needed good parents and we were choose! give me a shout
love hugs and best wishes

Hello there,

Your daughter is BEAUTIFUL!!! Congratulations!!!! As hard as it may seem, please enjoy every second because they grow so fast!!! This is so much harder on you that it will EVER be on her!! Children adapt to whatever they have and you need to be positive and strong and believe that your little precious girl is no different than anyone else. You have to look at her everyday and assure her that she can do ANYTHING and that she is beautiful, because she CAN and she IS!!! It is all in how we raise them. If we believe in them, they will grow up to believe in themselves and no matter what anyone says or does they will have the confidence and the love that we provide.

I know it is hard. My daughter is 7 months now and I still have bad days, which I know will never go away. But it has gotten much easier. And watching her grow and reach every milestone (smile, sit, eat table food, babble, roll over) has made me realize that nothing will stop her. I remember one morning I woke up crying (which happened a lot early on) and when I looked at her she was smiling at me and I thought "what am I doing???" This kid is so happy and she will be so happy!!! Her smile keeps me going every day. Please don't be upset. Your daughter will make you so proud, she will do things that will make you laugh and cry all at the same time. It is a hard journey but a beautiful one. Don't waste your time trying to figure out why and how and all that stuff. Enjoy your precious little angel and know, in your heart, that her life will be just as beautiful as it would have been if she was born without PFFD. This condition will be a part of her life but it certaintly will not define who she is.

Hang in there and if you ever want to chat please feel free to write me at


I just wanted to let you know that you have a wonderful way with words. Everything you wrote is so true!!!! Thanks for putting a smile on my face!

Dearest Heather!!!

Congrats on your new bundle of joy!!! My daughter Emma was born on 1/30/06 with tibial hemimelia of the right leg and a short femur. She is also missing a total of 3 fingers. I didn't know about Emma's condition until she was born (at her 20 week ultra sound they measured her "good leg"), so you could imagine my shock when they told me something was wrong. Like you, I went through so many different emotions. I too didn't know why God would let this happen to sweet innocent children who didn't do anything to anyone. Although it's hard sometimes, I know I can't go around being angry and sad all the time. A lot easier said than done,right. I still have good days and bad. On one of my "good days" I sent out a newsletter to family and friends and it really helped me to share our experience with them. My family and friends couldn't believe how well I was handling everything. At the time, I was. But somedays are so much harder than the others, but when I'm feeling really down, I look at my beautiful daughter and realize that she's not just a leg or fingers, and I see her for the beautiful child that she is. I am a first grade teacher and I see first hand how loving and excepting children are. I know you worry that Kalyn will have a harder life than her peers, but I think our daughters will prove us wrong by showing us everything that they can do. I wanted to tell you about another website for children born with hemimelia. It's It's a really supportive sight, as well. If you ever need to talk my email is If you send me your email address, I'll send you some pictures of Emma. Take care and enjoy every second with your little one!!!!


Can we exchange pictures. My son too, has tibia hememlia and we are looking to amputate. Did you choose another option? Im still not ok with this outcome but am worried it might be the only option. My personal email is

Ill send pics of my sweet baby when I get your email.

Thanks for the support

Congratulations on such a beautiful daughter!! I love those cheeks!! My daughter, Sami, will be 2 on July 1. She has pffd in her left leg. Like you, I went through all the everyone out there, really!! This site helped me so much. Especially, just knowing I wasn't alone. But, I have learned, through Sami, that everything is going to be fine. Kalyn will be, too. She'll amaze you...and those around you, daily! Sami learned to sit, crawl, CLIMB and walk all within the "normal" range. She's learning to walk downstairs and jump currently. I think seeing all that has helped me to be "ok" with it. I still have bad days...but not as much. Mostly, I can't wait to get out and show her off. I have 2 older son's who are equally as proud of her. We know she'll have tough times, but I also know how I handle it now is teaching her how to handle it as she grows.

Enjoy your daughter...she's beautiful and she will blossom with all the love you give her.



Our little angel was born on feb27, 2006. We knew before he was born there would be a problem but we had no idea it would be this severe. Our son Logan was born with no tibia, so he doesnt have a knee or ankle. He also has pffd on the left hip. We have to amputated his left leg at the thigh bone at 12 months. Our baby is almost 4 months and I am still not ok with this. Our babies are our everything and they will be strong and get throught this, we will have a harder time than they ever will. My heart goes out to you, as I cant say I know how you feel, Im sure We are feeling both, terrilby over whelmed. Hang in there, she is absolutly beautiful!