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We were blessed with our third child. My pregnancy seemed like the other tow until the seventh month when we were told that there was some problems with our babies measurements on her u/s. The doctors could not tell us what was wrong so they just kept telling us different things. They told us she could have brittle bone syndrome then they told us she could have acondroplasia (dwarfisim). They then decided that because they did not what was wrong it was best to deliver her. so 8 weeks early and 2.5 lbs there she was, Tai. It was only discovered then that she had pffd. Tai has bi-latteral pffd and we are looking to talk with anyone that has had any kind of experience with bi-latteral pffd.


Brandy, I have had a very similar experience. My daughter was born with bilatteral pffd and is now 1 year old. During the ultra-sound we too were told about acondroplasia and then our ultra-sound expert in S.F. finally told us it was focal femoral deficiancy. He went on to explain that from above the hips our daughter appeared to be fine but that she would never be able to walk without the help of "something". We have been through a lot as you are well aware but fell extremely grateful when she finally was born. She was 2 weeks early weighing in the mid 5 pound range. So far Melody is seeing a physical therapist 2 times a week to help with her balance, strength and overall locomotion. We see huge improvements every day. She crawls forward by "combat crawling" rolls over to get around also pushes herself backwards on her but. She does also love to stand, with our help of course. Even if she has just fallen over and starts crying, the sensation of standing, quickly quiets her and a huge smile is replaced on her face. I know she will walk, because she is already showing us that she does. Hope this helps

Lilly also has bilateral PFFD Class D. She is almost 3 and is learning to walk on her own. She has a wheelchair, walker and crutches as well. She has taken 8 steps unassisted so far...that's the record. She is a great girl :-) We have been in contact w/ a faily in TX and are planing to meet up w/ them in the next couple months. We live in Minnesota. It would be great to meet w/ other families w/ bilateral PFFD. I would love to keep in touch.

Hi Jenny my name is Brandy. my husband and I also have a daughter with bilateral pffd I am not sure what class as we have not really talked wiht alot of doctors who know much about this condition.I am happy to hear your daughter is learning o walk on her own that must be really great for your family. if you would like to talk i know how frustrating it can be to find another person that is going through this so feel free to email us anytime.

Hi I am sorry it took so long to reply we just moved and things have been very busy. Thankyou so much for talking with me it ally helps alot for us to hear from other families who are going through this.Tai is 7 months old and was born 9weeks early weighing 2.5 lbs. Tai is thriving now.she is learning how to roll over and can slide herself around on th floor. I would love to keep in touch as to the progress of our daughters.

Hi, Brandy. I am a 28 year old with bilateral PFFD. I've grown up with this and been through various surgeries, including a left tibia lengthening when I was 11. As an adult, I do have some trouble walking, but I'm totally independent. I'm a teacher, I live on my own, I can drive a car, and I can do all normal day activities without much difficulty. I do use crutches when I need to walk long distances (more than a few blocks), and I do have pain when I've done more than I know I should have.

I would love to answer any questions that you may have. Contact me through here, and maybe we can exchange email addresses.

Hi ! My name is Angela, we have a daughter who is just 5 years old - Johanna. She also has no right hand and a twisted foot which seem to have delayed her walking. I am keen to get in touch -