PFFDvsg
Guestbook - 1997
2000 1999
1998
1997
Visitor: Chuck, Karla, Dylan, & McKenna Berg
Reference: Luck, or Divine Intervention!!!!!!!!
Location: Maple Grove, MN....USA
WebSite:
Web Info:
Contact: Grimbold@AOL.Com
Date: Tuesday, Dec 30, 1997 at 18:23:22 (EST)
Comments: Dear Everyone, We just wanted to leave a note
saying Hi, and if we can help in any way, just drop us a note at
Grimbold@AOL.Com. We have a beautiful baby girl named McKenna who was born
with PFFD in her right leg. We are set to see Dr. Paley on Mar 05, 1998,
and if there are any questions we can ask on your behalf, just let us know,
and we will get back to you!!!!!!! Good luck, & God Bless!!, Chuck, Karla,
Dylan, & McKenna
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Visitor: Donovan Douglas
Reference: I found you through yahoo search.
Location: Harrisonburg, Virginia
WebSite:
Web Info:
Contact: donoman@shentel.net
Date: Thurs, Dec 25, 1997 at 11:56:31 (EST)
Comments: My wife and I have a 7 year-old daughter who
has had one Illizarov leg lenghthening and two other surgeries related to
her hip. We would like to be in contact with others in a similar situation.
I have numerous stories relating our experiences and how this situation with
pffd has affected our lives. Please email. Thank you!
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Visitor: Cindy
Reference: Been here before
Location: Rhode Island- USA
WebSite:
Web Info:
Contact: Momma0004@aol.com
Date: Sat, Dec 20, 1997 at 12:21:17 (EST)
Comments: Hi. IT`s been a while since I signed the guestbook.
I signed last summer when I was pregnant with my son who I suspected had
PFFD. Well, Branden was born on Aug 19th and he has bilateral PFFD, and all
of the normal things like missing fibula`s etc that go with it. Anyone who
would like to get in contact with us and just talk about it or whatever,
I would really appreciate it. Cindy
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Visitor: Hanne Lindkvist
Reference: Correcting our E-mail address
Location: Denmark, Europe
WebSite:
Web Info:
Contact: pelind@post9.tele.dk
Date: Fri, Nov 28, 1997 at 07:42:26 (EST)
Comments: Hello again from Denmark. We have found out
that our E-mail-address had lacked the letter d in the first: Pelind. I just
wanted to correct this while we are hoping to here from any of you, who have
some experience in unilateral PFFD. Naturally, we hope get in contact with
someone involved in this matter - especially others from Europe or even as
close as in Denmark. There most be someone in Denmark! My husband and I will
follow this web-page closely ! Greetings from Denmark . Hanne Lindkvist
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Visitor: Royce Schlenker
Reference: Excite Search
Location: Madras, Oregon
WebSite:
Web Info:
Contact: rosco@bendnet.com
Date: Tuesday, Nov 25, 1997 at 01:12:35 (EST)
Comments: Thank you for having this information available
to us parents about PFFD. I jumped for joy when my search brought up your
page. We have often felt confused, frustrated, and most of all alone in dealing
with our daughter's condition. I look forward to reading the information
and hearing from other parents.
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Visitor: Julia Euclide
Reference: Superkids newsletter
Location: Kent, Ohio
WebSite:
Web Info:
Contact: jeuclide@kent.edu
Date: Tuesday, Nov 18, 1997 at 08:44:41 (EST)
Comments: I am the proud mom of 3 children. Our oldest,
a daughter, has pffd in her left leg. Her right leg is completely absent.
Is there anyone out there with this combination? Our daughter is a happy,
sucessful 11 1/2 year old. We have yet to meet another child with this birth
defect. I would be happy to correspond with any moms of young children wondering
what the future may hold and would be especially interested in receiving
the support of moms of nearly-adolescents.
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Visitor: DYLON MAGER
Reference:
Location: MANAHAWKIN,NJ 08092
WebSite:
Web Info:
Contact: MFJ@ADELPHIA.NET
Date: Sat, Nov 15, 1997 at 17:04:16 (EST)
Comments: DYLON MAGER IS MY SON, I AM KRYSTINE HILTON
DYLON IS ALMOST 7 YEARS OLD AND HAS PFFD HE HAS A CONGENITAL BIRTH DEFECT
OF THE RT HIP AND HAS ALREADY HAD 2 HIP SURGERIES HE IS GOING TO START LEG
LENGTHENING IN THE SPRING.
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Visitor: Metro Skyrpan
Reference: luck
Location: Wandering River, Alberta Canada
WebSite:
Web Info:
Contact: skyrpame@alpac.ca
Date: Thurs, Nov 13, 1997 at 19:19:40 (EST)
Comments: My wife Janelle and I have a daughter Amber,(our
fourth) who was born with unilateral PFFD of the right leg. She is five years
old now. I am happy to say that things are a lot than they could have been.
We have recieved a lot of help from the War Amps of Canada and the Childrens
hospital in Alberta. Please drop me a line if I can help with some help about
services in Alberta.
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Visitor: Hanne, Peter and Christian Lindkvist
Reference: Looking for information about PFFD.
Location: Roskilde, Denmark
WebSite:
Web Info:
Contact: pelin@post9.tele.dk
Date: Thurs, Nov 13, 1997 at 15:28:15 (EST)
Comments: We have a 5 month baby, born on 2. june, with
unilat.pffd. He is our 3. child and we were quite shocked when we learned
that Christian was handicapped. We have read the articles written by Dr.
Paley and find that this web-side is wery usefull, and we would like YOU
to write to us. Our english is not always that good, but we are trying our
best. The best regards from Denmark.
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Visitor: Paul
Reference: by Janices suggestion
Location: Kaufman
WebSite:
Web Info:
Contact: pak@erols.com
Date: Thurs, Nov 06, 1997 at 20:29:27 (EST)
Comments: Janice asked me to add a link to here from
my home page, so I figured I ought to actually VISIT you. Thanks for all
your support.
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Visitor: Charles,Karla,Dylan & McKenna
Reference: Divine Intervension, or sheer luck!!
Location: Maple Grove, MN...USA
WebSite:
Web Info:
Contact: Grimbold@aol.com
Date: Thurs, Oct 16, 1997 at 19:14:46 (EDT)
Comments: Dear Everyone, Thank you all for your wonderful
letters and phone calls!!!If it weren't for you, my wife and I would be insane,
and probibly have listened to the local Specialist who would have had us
do the unthinkable...McKenna is doing just great, and we hope to see Dr.
Dror Paley soon. We hope to keep you all updated on her progress as we go,
and if there are any questions you might have, or if you want to exchange
phone numbers, or fax numbers, or addresses, please write me at Grimbold@aol.com,
and I'll get back to you as soon as I can. Again, thanks for all your support,
and god bless!!!!!!!!!!!! Sincerly, Chuck, Karla, Dylan & McKenna
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Visitor: Irene, Stephen, And Zoe Ferranti
Reference: Superkids
Location: Tappan, New York
WebSite:
Web Info:
Contact: ferranti@webspan.net
Date: Tuesday, Oct 14, 1997 at 22:10:58 (EDT)
Comments: Thank you, Thank you for this website. We are
the proud parents of a beautiful 2 year old girl, named Zoe, who has PFFD
(Left Leg). Dr. Paley is currently treating her, We will begin lengthening
in Feb '98. Please contact us if you would like to talk or have advise.
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Visitor: Dorene Winckler
Reference: Through a friend
Location: Scotland, South Dakota
WebSite:
Web Info:
Contact:
Date: Fri, Oct 10, 1997 at 16:24:50 (EDT)
Comments: Thank you for all the information on this site
and stories. Very helpful to us parents of a special newborn with pffd.
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Visitor: David
Reference: Super Kids
Location: Richmond Virgina
WebSite:
Web Info:
Contact:
Date: Thurs, Oct 09, 1997 at 22:24:52 (EDT)
Comments: I am so happy to have found this web site .
THANK YOU SUPER KIDS. More to follow at another time soon.
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Visitor: Rick Siegel
Reference: Superkids
Location: Birmingham, AL
WebSite:
Web Info:
Contact: rickflash@mindspring.com
Date: Mon, Oct 06, 1997 at 22:01:15 (EDT)
Comments: I am filled with happiness to another support
site online. Good work! My two kids, ages 3 and 4, neither of whom have PFFD,
but instead have other limb differences, went to see Dr. Paley last month.
He impressed us greatly. I would be happy to talk to anyone who is contemplating
surgery. Thanks for having a great page.
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Visitor: Mike - PFFDvsg Webmaster
Reference:
Location:
WebSite:
Web Info:
Contact: pffdvsg@ohio.net
Date: Sun, Oct 05, 1997 at 22:30:55 (EDT)
Comments: Welcome to the PFFDvsg guestbook. Due to a
server crash, all entries were lost on 9/23/97. Old entries from the beginning
to 7/97 can be viewed by following the Guestbook Archive link on our home
page. Entries from 7/28/97 to 9/23/97 were lost. We are extremely sorry.
If you posted in that period, PLEASE re-post. Thanks....Mike
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