An online resource for families and friends of children with limb differences.
Total votes:
redmom
Member
jade-dlove
I'm so glad that you found this sight and congrats on the birth of your son. I felt very much the same way after my son was born. I just wanted to reach out to others who understood what I was feeling. I should warn you that my experience has been that the quest for answers is very slow. But that gives you plenty of time to make the right decisions for your son and your family. We're here if you need us or have questions.
ceaton
Member
Dear RedMom,
My name is Caroline Eaton and I am a patient of Dr. Dror Paley. I want to direct you to his new educational website: www.limblengtheningdoc.org
There you can find written material on the advances that he has made with Congenital Short Femur, as well as view a video presentation which outlines treatment protocol.
I didn't find Dr. Paley until I was 25. But once I did, my life has dramatically changed for the better. I can honestly say that his expertise is unmatched anywhere in the world. The sacrifices and challenges it might require in order to get to him will be worth it ten times over. Please let me know if you need help getting in touch. My email address is ce@lengthening.us
All the best to you!
redmom
Member
I have been to the website many times and have watched the video. I would warn parents that parts of the video can be difficult to watch. However, I am very glad that I did. I was able to ask better questions of our surgeon. Including, whether it will be worth the expense to have Dr. Paley preform our sons surgery.
I appreciate you posting the website for other parents.
jade_dlove
Member
redmom
you had mentioned the expense to have Dr. Paely perform the surgery...do you have any idea roughly how much it costs or do you know how I could get a rough estimate of getting it done by Dr. Paley? Thanks!
redmom
Member
Expenses for families will vary. Here is what I included to estimate our families expenses. Our health insurance copays and deductibles, plane tickets to and from West Palm Beach, living expenses while in West Palm Beach, and the number of surgeries our son will need. If you have questions I strongly encourage you to contact Dr. Paley. I have been pleasantly surprised by the personal attention he gives to his patients. I have found him straightforward and honest about what we are getting into. You can contact Dr. Paley by going to his website. www.limblengtheningdoc.org
ceaton
Member
Hi Everyone! I wanted to post Dr. Paley's new contact information. I am moving to West Palm Beach this weekend to begin working for him as his Program Coordinator/Education Liaison. Any questions that you have about the hospital, appointments, places to stay, physical therapy, schooling, etc. should be directed to me.
Dror Paley, MD, FRCSC
PALEY ADVANCED LIMB LENGTHENING INSTITUTE
St. Mary’s Hospital
901 45th Street
Kimmel Building
West Palm Beach, FL 33401
877 765-4637 (Toll Free)
561 844-5255 (Main)
561 844-5245 (Fax)
Email address: dpaley@lengthening.us
Web site: http://www.limblengtheningdoc.org
Please feel free to contact him for advice. His email address is: dpaley@lengthening.us
You can also reach me, his Program Coordinator/Education Liaison at ceaton@lengthening.us
gramacyndi
Member
Hello, my name is Cyndi Burns. I live Albuquerque, New Mexico. I have a grandson that was born 02/12/2009. He will be 4 months old tommorrow. He was diagnosed with VACTREL Association when he was born. He has all but one of the anomalies. He does not have the anal. Thank GOD for that. He had surgery at 4 days old for the esophageal atresia. The surgery was a success. He has a severe club foot whereas, his left femer is almost non-exsistant, he only has the larger of the two bones that are located below the knee and his foot is dislocated at the ankle and turned upside-down into his crotch. BUT, he has full functionality in his foot, meaning that he moves his toes and foot. The doctor that seen him for this abnormality said that if he were to have a better quality of life when he got older, that the best thing to do was to amputate the left leg below his knee and fit him with a prosthetic. Myself and my daughter refuse to take just one doctors opinion. What I'm wanting to find out, is if there is a doctor out there, (somewhere) that can help my grandson KEEP and lengthen his leg and that can straighten his foot? I realize that he is only 4 months old, BUT there is no time like the present to find the answers that we need. And, I know that he can't be the ONLY baby out there with this condition. If ANYONE can help, I would really appreciate an e-mail. You can contact me at: (sassiecyndi@yahoo.com). Thank you in advance.
mikkiblew
Member
Redmom, I have a 17 year old daughter who was born with her left leg shorter then her right... When she was born her left foot was flush against her shin and I had to use cotton balls to hold her foot down... She has had to use special lifts on her shoes since she was able to walk.. I was informed that she wouldn't be able to walk until she was somewhere around 2 due to the length discrepency... She shocked everyone and was walking at the age of 7 months... We were told that when she finished growing that they would have to do the leg lengthening surgery... Here at the age of 17 she is refusing to have the surgery because she is used to it and doesn't want to be unable to do the things that she does with her friends... They said that she would have to go through several operations and have to wear special braces on her legs with pins in them and have them turned 2-3 times daily...
About 4 and a 1/2 years ago I had a baby that was born with Poland Syndrome and was informed that my daughter could possibly have it of the lower extremities... So I know just how you feel and my heart goes out to you, but I can assure you that she will do well in life and let her decide for herself when she gets older if she wants to have the surgery unless it is effecting her hips and back.. My daughter has been informed that she will have to have the surgery if her spine gets worse, for she does have a slight curvature of her spine... Good luck and god bless...
Please let me know what is going on with all the babies with short femurs. Expecting grandbaby in April 2010 and her femur is short. We are so worried and I think everyone has left this site.
sra
Member
No need to be worried.
I have lived happily for 30 years now with a 35 cm + difference in the legs, short femur and underdeveloped hip. I have no pain or other effects, and I have always done everything I wanted. For life reasons, I am now pursuing a nursing degree, and I hope it will go as well as my previous profession. I always finished first in my class in every school/university I went to. I was never teased or bullied.
Just on a note - I never wanted a surgery of any of the types my parents researched very eagerly. Please do consider your child's wishes! We are not "incomplete"!
The most important thing you can do for your child, is to let him/her know that he/she is loved, is complete, and has your full support. I know quite a few exceptional people like us - and not one who has not done well in life (all according to his/her own standards, of course).
All the best to you all.
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