PFFDvsg

Guestbook - 1998

2000 1999 1998 1997

  Visitor: Beth Anne
Reference: 
 Location: 
  WebSite: 
 Web Info: 
  Contact: BBLMS@AOL.COM
     Date: Tuesday, Dec 22, 1998 at 19:35:56 (EST)

Comments: Hello again everyone..... Michelle is doing great. She is attending pre-school/day care and is wearing her leg all day. She does take it off during nap-time. Thank you all for your support. I don't know what we'd do without it............. Beth Anne

  Visitor: Peter Helson
Reference: Search engine
 Location: Australia
  WebSite: 
 Web Info: 
  Contact: phelson@davidjones.com.au
     Date: Mon, Dec 21, 1998 at 02:02:52 (EST)

Comments: My son has PFFD (d.o.b. 6/90) and has had the Illiazarov lengthening (9.5cm) last year (a horrendous time !) - good to find a web-site on this at last

  Visitor: Steve Thompson
Reference: Yahoo
 Location: Virginia Beach VA
  WebSite: 
 Web Info: 
  Contact: javs4@erols.com
     Date: Thurs, Dec 17, 1998 at 23:32:01 (EST)

Comments: I was surprised and elated to find this page. My son who is 3 1/2 will be going through his first procedures next year. The articles that I've read so far have given me insight into the process and progress of limb lengthening. I will send my son's story soon.

  Visitor: Judith Charles
Reference: Internet
 Location: Abington Pa.
  WebSite: 
 Web Info: 
  Contact: judith c @ bell atlantic.net
     Date: Tuesday, Dec 15, 1998 at 10:27:37 (EST)

Comments: My friend just had with PFFD She is ten weeks old and we need info on PFFD. Her name is Lori Hill.

  Visitor: Sue and Vic Walker
Reference: PFFD search
 Location: Junau, Alaska
  WebSite: 
 Web Info: 
  Contact: VicDVM@aol.com
     Date: Mon, Dec 14, 1998 at 01:28:03 (EST)

Comments: We had our first consultation with an ortho doc on Dec 2 for our son Keagan who was born in Oct with unilateral PFFD. We saw Dr. Kit Song at Children's Hospital in Seattle. We found out that Keagan probably has Aitken Category B type PFFD, that he has a fibula, and that his predicted limb length difference at maturity would be about 15cm (7 in). He is definately a candidate for limb lengthening, and Dr. Song advocates two procedures - beginning at age 7, with possible surgery to stabilize the connection of the femoral head to the shaft and maybe another operation to stabilize the hip - he feels the acetabulum could become shallow over time. Suprisingly - shockingly - we found that Keagan had suffered a fracture of the left femur at about three weeks of age. We were told that this is common with PFFD and that it could happen again!! Anyone else have this occur??? I was also suprised to hear that no prosthesis was advocated. We were told that he would crawl and walk without it - on tippy toe and with the long leg bent. I've heard from others that they had shoe lifts or platform prostheses. Comments on this would be appreciated! We are thrilled to know that Keagan will someday have legs of equal length and are now enjoyig his babyhood in between the crying, endless walking and rocking and thrice nightly nursings. Every smile makes this all worth it! Thanks to everyone for your support - best wishes to all - Sue and Vic Walker

  Visitor: Dee Schick
Reference: web search FFD
 Location: Whakatane, New Zealand
  WebSite: 
 Web Info: 
  Contact: schick@wave.co.nz
     Date: Thurs, Dec 10, 1998 at 20:05:28 (EST)

Comments: How absolutely amazing to see this web site and the support group. Emma is 3 in Jan and has PFFD. She is a twin, and Zachary is OK. Our doctor here in NZ has been liasing with Dr Paley, and is hoping to schedule her surgery next year at a time when Mr Paley is in NZ. The reports that I have read are very encouraging! Thanks and we'll, no doubt, be in touch.

  Visitor: Ruth Levine
Reference: 
 Location: Baltimore
  WebSite: 
 Web Info: 
  Contact: ruthl@iadb.org
     Date: Mon, Dec 07, 1998 at 12:45:40 (EST)

Comments: A quick update on our daughter, Sarah, now 21 months. She's now doing very well with her platform prosthesis, walking on her own part of the time, and with a little help (for balance) the rest. The best part is her delight in finally being upright and mobile! We're scheduled for her first procedure (to correct coxa vara) next summer, and then (hopefully) we'll start the lengthening at the MCLLR. This site continues to be a major source of help for us!

  Visitor: Carrie Stromer
Reference: searching
 Location: Indiana
  WebSite: 
 Web Info: 
  Contact: stromer@csinet.net
     Date: Thurs, Dec 03, 1998 at 19:54:07 (EST)

Comments: No comment at this time.....

  Visitor: Beth Anne Simpson
Reference: 
 Location: Burleson, Texas
  WebSite: 
 Web Info: 
  Contact: BBLMS@AOL.COM
     Date: Tuesday, Dec 01, 1998 at 15:36:43 (EST)

Comments: Hi Everyone, I just wanted to quickley update you all on Michelle's progress. She received her new bending leg two weeks ago. She had her first physical therepy on the Mon before Thanksgiving. SHE WALKED BY HERSELF THE FIRST THEREPY SESSION!!!!!!! What a kid. She is really doing great. We are off this week of therepy. So, we practiced walking at the mall today. she is upto about an hour in her new leg. Hopefully, by the 7th of Dec she will be up to 2 1/2 hours at which time she will go for her last week of therepy. Thanks for everything. Beth Anne

  Visitor: amanda helgerson-smith
Reference: searching for paraxial fibular hemimelia
 Location: columbus georgia
  WebSite: 
 Web Info: 
  Contact: helgerson_amanda@colstate.edu
     Date: Mon, Nov 30, 1998 at 11:35:48 (EST)

Comments: Hi everyone. I just read 'A Puddle of Tears' and it hit home with me 100%. Many times the only one you can turn to is HIM. Family and friends cannot understand your pain and are often unable to deal with their own emotions regarding your child. God has gotten me this far. I know HE will get me to the finish line strong for my dear daughter, Jordan Ashleigh Smith. She is nearly fourteen months and will undergo her first two surgeries in Dec. God bless you all, Amanda Helgerson-Smith

  Visitor: Tina
Reference: Wanted to learn more
 Location: Pennsylvania
  WebSite: 
 Web Info: 
  Contact: shortyTina@webtv.net
     Date: Sat, Nov 21, 1998 at 13:00:48 (EST)

Comments: I am 20 years old and underwent a lengthening of my right femur at age nine. I had this done at Shriners Hospital in Philadelphia. I had the external fixator on for about 8 months. Due to complications, everything went down hill from there. I had 14 operations to fix that mistake and the doctors mistake. I got my 3 inches that we were going for, but my bone was too soft to have the fixator taken off. My bone bent to a 90 degree angle while in a body cast. I had skeletal traction to fix the bend for 4 months. My bone would only straighten out to 30 degrees. So, because of that, my length was lost. I've had so many problems. My doctor broke my leg is surgery where my growth plate is on my right leg. So, my leg couldn't grow anymore. They had to shorten my other leg then stop the growth. I have a rod in my left leg. My right leg went out of wack because of the bend in the femur, so my ankle bent too. I had an osteotomy done and they took bone from my hip to correct my ankle. My bones just weren't healthy enough to heal fast. It took a year to heal even with an EBI unit (stimulations sent through the cast). I just had a pin taken out of my ankle a year ago. Ten years of hell. I sure am brave, but I get so down sometimes. I just wanted to speak out. I want to tell everyone what I went through, and I hope that everyone else's surgeries goes good. No one else deserves to have this happen to them. I guess I was the unlucky one.

  Visitor: amanda helgerson-smith
Reference: surfing the web for info...
 Location: columbus georgia
  WebSite: 
 Web Info: 
  Contact: helgerson_amanda.icapp.students.csu
     Date: Mon, Nov 16, 1998 at 14:32:35 (EST)

Comments: I am so happy to see a support group for parents who feel they are all alone. My daughter was born with paraxial fibular hememilia and is facing her first set of surgeries the Mon prior to Christmas. I wish there was a group of peers who have faced or are facing the same painful realities that I am facing. This is the closest I have come so far. I know that each of you can understand 100% the emotions I face daily knowing that I must make life changing decisions for my baby being she is too young to tell me what she feels is best for her.

  Visitor: Brett Murdock
Reference: Yahoo
 Location: South Burlington, Vermont
  WebSite: 
 Web Info: 
  Contact: schnook123@aol.com
     Date: Sun, Nov 08, 1998 at 10:51:15 (EST)

Comments: I am 10 years old and have PFFD in my left leg. I recently moved to Vermont from New Jersey. I have had one lenthening procedure done on my lower leg 5 years ago and about to be scheduled for my next procedure soon. My mom and dad are wondering if anyone has any experience with the Shriners Hospital in Montreal; good, bad, or otherwise. I am in the fifth grade and love to play all kinds of sports, especially baseball. Please contact me with any info or comments. Thanks!!!

  Visitor: Barbara Doughty
Reference: search
 Location: Norwalk, OH
  WebSite: 
 Web Info: 
  Contact: badoughty@accnorwalk.com
     Date: Tuesday, Nov 03, 1998 at 19:59:18 (EST)

Comments: I have been reading notes at this site for at least a month and it has helped my family deal with the birth of my neice, Sarah. She was born Jul 17 with bilateral PFFD, although the diagnosis was not given for about 2 months. Reading your letters has helped my brother and sister-in-law have great hope for Sarah. She has very short femurs and clubbed feet which have been casted since she was a week old. She is doing well. My brother and sister-in-law have been told that she will walk in due time and that prosthetics are a possibility later. I have contacted a few names posted at this site and thank you for your answers. We are especially interested in cases of bilateral PFFD since they are so uncommon.

  Visitor: Brian & Terry Day
Reference: 
 Location: Raleigh, NC
  WebSite: 
 Web Info: 
  Contact: brian.day@mci2ooo.com
     Date: Tuesday, Nov 03, 1998 at 12:55:37 (EST)

Comments: Our daughter, Erin had bilateral PFFD and it is different in each leg. We are planning surgery with Dr. Dror Paley this spring to realign her only femur.

  Visitor: Lindkvist
Reference: 
 Location: Denmark
  WebSite: 
 Web Info: 
  Contact: pelind@post9.tele.dk
     Date: Sat, Oct 31, 1998 at 04:28:22 (EST)

Comments: Hi everyone! Here is a litle update from Denmark. Christian is now 17 month (PFFD on his left leg), and has a prosthesis,on wich he now can walk, an enjoy comming around. He is a happy boy, who already loves cars. In january we are going to the univercity Hospital in Copenhagen for the next evaluation of his hip, and the possibilities for bone lengthening. Best wishes from Hanne and Peter.

  Visitor: BETH ANNE
Reference: 
 Location: BURLESON, TX
  WebSite: 
 Web Info: 
  Contact: BBLMS@AOL.COM
     Date: Wed, Oct 28, 1998 at 17:00:40 (EST)

Comments: Hi everyone, Michelle's cast came off Oct 12, 1998. We had our first test socket fit today, October 28, 1998. I spoke with a lady who's little 4 year old boy was affected with pffd. I'm sorry that I didn't get your name. But I hope you've checked out this web site. Please email me and let me know that you found us and what you think. bye for now all. beth anne

  Visitor: Daniel Guarino
Reference: 
 Location: Chelmsford, MA
  WebSite: 
 Web Info: 
  Contact: daniel.guarino@keyport.com
     Date: Fri, Oct 23, 1998 at 13:58:16 (EDT)

Comments: No comment at this time.....

  Visitor: Paul Verkinderen
Reference: via Alta Vista
 Location: Belgium, Antwerp
  WebSite: 
 Web Info: 
  Contact: Paul.Verkinderen@village.uunet.be
     Date: Sun, Oct 11, 1998 at 16:54:56 (EDT)

Comments: We have a daughter of 4,5 years (8/4/94) and she has PFFD (left leg and right arm). Claudia can walkand run, ride a bike, swim on her own, write with her left hand. She had 2 operations on her right hand to make it more functional (she had only three fingers). She has a leg prothese because her leg is about 10 cm shorter. I want some information about children with the same problems, perhaps in Belgium. My wife was working as a nurse in the operation room of a hospital while she was pregnant. Are there some people in the same situation ? Paul & Carmina Verkinderen

  Visitor: Paul Jackson
Reference: PFFD - research
 Location: Upstate NY
  WebSite: 
 Web Info: 
  Contact: pbj@clarityconnect.com
     Date: Sat, Sep 26, 1998 at 23:44:30 (EDT)

Comments: Hello everyone ! I'm glad we are not alone. My daughter was born w/PFFD in '89, with complications in the hips & knee. She has had 3 hip surgeries to reconstruct what was not there when she was born. We started off w/a Dr in NY city first, what a mistake. For the past 7 years she has gone to Shriners Hospital for Children in Springfield, Ma. What wonderful people !! They are hesitant to do leg lengthening because of her other complications. Her doctor did refer us to his good friend Dr. Herzenberg in Maryland. We went there last year, & he said he can do it. We now are approaching the time to make a definite decision, when & where it will be done. That question has been with us since the day she was born. She is very nervous about going to doctors and hospitals, so trying to have her buy into this idea is difficult. If anyone has time ( a rare item these days ) to e-mail us, parents or a child w/pffd, we would love to hear from you. Thank you. Paul.

  Visitor: Beth Anne Simpson
Reference: 
 Location: Burleson, TX
  WebSite: 
 Web Info: 
  Contact: BBLMS@AOL.COM
     Date: Wed, Sep 09, 1998 at 17:22:25 (EDT)

Comments: Hi everyone. We've just had a little set back with Michelle. She was crying last week at night and not sleeping well. Wed, she told me that her heel on her little leg hurt and it felt like something was sharp sticking her. I called Scottish Rite and Fri her hip spika cast came off and another went on. Her cast was too loose and not helping her heal. (Michelle had been picking cotton out of it) Her new cast is called her green Jamie cast, since it is like the one Jamie Miller has. Her little leg is casted with a cast band around her waist and her big leg is free. She will be in that cast until Oct 12th. Hopefully, she will be out of her green Jamie cast at that time. Thanks for all of your prayers Love, Beth Anne

  Visitor: Joanne Pichon
Reference: Informed by a health worker
 Location: New Zealand
  WebSite: 
 Web Info: 
  Contact: dpichon@ihug.co.nz
     Date: Tuesday, Sep 08, 1998 at 06:17:21 (EDT)

Comments: Quite interesting as I fall into this catagory and I have an artifical limb

  Visitor: Joann Bilek
Reference: Internet search
 Location: Battle Creek, Michigan
  WebSite: 
 Web Info: 
  Contact: joann_bilek@spartanstores.com
     Date: Mon, Aug 31, 1998 at 10:17:20 (EDT)

Comments: Hi guys, Just thought I'd let the visitors on the guestbook know how great Jamie is doing. She is quite mobile with her walker now. She loves to torment her mom by sayingLook mom, no hands!. What a kid. She itches some, and lets us know when her leg aches so she can take her medicine. She relies on the Tylenol less and less everyday. She goes back to Shriner's on Sep 14th and if everything goes great and her x-rays show healing, the cast is off!!! Can't wait. I'll be in touch and will be updating Jamie's page on the pffdvsg website soon. Thanks for all of your e-mails and support.

  Visitor: Beth Anne Simpson
Reference: 
 Location: Burleson, TX
  WebSite: 
 Web Info: 
  Contact: BBLMS@AOL.COM
     Date: Thurs, Aug 27, 1998 at 23:03:08 (EDT)

Comments: Hello everyone........ Michelle is still doing great! She is doing better than I expected. She is scooting herself around the house and getting up and down off and on beds. She has made me a nerveous wreck. Her next Scottish Rite appointment is Sep 15th. If the xray shows a total healing the cast will come off that day. And she will be casted for her new bending leg. She has only had 3 accidents so far. So, we aren't dealing with a total stinky cast yet. ha ha Before we know it, she'll be marching with her friends at pre-school. Beth Anne.......

  Visitor: Peter Tropf
Reference: Internet-Search
 Location: Karlsruhe (Germany)
  WebSite: 
 Web Info: 
  Contact: Peter.Tropf@t-online.de
     Date: Sun, Aug 23, 1998 at 11:25:33 (EDT)

Comments: My daughter has PFFD Type 1. She was born in Sept. 1996. A Center for PFFD in Germany is in Aschau (Chiemsee). Thanks for Your labour to help PFFD-patients.

  Visitor: FALINA ALI
Reference: 
 Location: TRINIDAD WEST INDIES
  WebSite: 
 Web Info: 
  Contact: printart@wow.net
     Date: Fri, Aug 21, 1998 at 19:35:24 (EDT)

Comments: Fantastic, I intend to visit more often and maybe if I have a little more time, I will share my story of my daughter Saeeda (Sidi), who was born with PFFD and had two leg lengthening procedures done in 1993 and in 1997. The second procedure being successful (she lengthened over 10 cms.)

  Visitor: BETH ANNE
Reference: 
 Location: BURLESON, TEXAS (south of FT.Worth)
  WebSite: 
 Web Info: 
  Contact: BBLMS@AOL.COM
     Date: Mon, Aug 03, 1998 at 10:04:20 (EDT)

Comments: Hi everyone!!!!!! Michelle's surgery went great!!!!! We brought her home last Fri. She is in a hip spika cast for 6 weeks. Then back to Scottish Rite for a check up and possibly to get the cast off and start physical therepy. Thank you all for your prayers and emails. They have ment the world to us. Beth Anne

  Visitor: Beth Anne
Reference: 
 Location: 
  WebSite: 
 Web Info: 
  Contact: BBLMS@aol.com
     Date: Fri, Jul 24, 1998 at 13:36:40 (EDT)

Comments: I'm trying to email cindy hussey. however, I don't have her full email address. Can anyone help?

  Visitor: Beth Anne
Reference: 
 Location: Burleson, Texas (south of Ft. Worth)
  WebSite: 
 Web Info: 
  Contact: BBLMS@aol.com
     Date: Tuesday, Jul 21, 1998 at 21:15:54 (EDT)

Comments: Thank you everyone for all of the support and prayers. Michelle's surgery is very soon (Tuesday), we are a mess of mixed emotions. However, we are certain we are doing the best thing for her. When I explained to Michelle that her foot would be on backwards, she thought about it for a minute, looked at me, smiled and said COOL! What a kid. We can all learn exceptance and bravery from our children. God also gives our special children the personality to strive past what others may call a disability. She's our little Michelle. God bless you all and keep in touch Beth Anne

  Visitor: Beth Anne
Reference: 
 Location: Burleson, Texas
  WebSite: 
 Web Info: 
  Contact: BBLMS@aol.com
     Date: Thurs, Jul 16, 1998 at 00:19:19 (EDT)

Comments: Hi everyone, Michelle's Van Nes Surgery will be Tuesday Jul 28, 1998 at the Dallas Scottish Rite Hospital. Please wish us luck and keep us in your prayers. P.S. Laura (holly's story) I'm still trying to get it together to personally write to you. I will.......

  Visitor: Courtenay LaVallee
Reference: my mom looked up pffd
 Location: Timber Bay, Saskatchewan
  WebSite: 
 Web Info: 
  Contact: timber.learn@sk.sympatico.ca
     Date: Mon, Jul 13, 1998 at 22:52:25 (EDT)

Comments: I would like to talk or write to other children that have PFFD. I am 12 years old.

  Visitor: Beth Anne Simpson
Reference: netfind and our pals newsletter
 Location: Burleson, Texas
  WebSite: 
 Web Info: 
  Contact: BBLMS@aol.com
     Date: Wed, Jul 08, 1998 at 21:41:11 (EDT)

Comments: Hi, our 2nd child Michelle has pffd in her right leg. She was born in Oct 1993. She will be undergoing the van ness proceedure in Jul 1998. I would love to hear from other parents that have elected for this proceedure. I have tried to write to Joann Bileck but her mail was returned. I'm thrilled to be able to talk to other people regarding pffd. It helps us not to feel alone. This is a wonderful and very helpful website. God Bless......

  Visitor: Donovan Douglas
Reference: 
 Location: Harrisonburg, Virginia
  WebSite: 
 Web Info: 
  Contact: donoman@rica.net
     Date: Wed, Jun 24, 1998 at 15:32:13 (EDT)

Comments: My e-mail address has changed since the last time I logged on. Please do not hesitate to contact me if you would like to comment on stories found at this website that I have written.

  Visitor: Tracey Arnold
Reference: Link from my page/on line journal
 Location: Pennsylvania
  WebSite: 
 Web Info: 
  Contact: arnoldin@toolcity.net
     Date: Wed, Jun 10, 1998 at 16:01:27 (EDT)

Comments: Recently our computer crashed and eliminanted (sp?) all of the addresses and letters that I recieve several months ago. Please! If you recall writing to me, send me another letter. Our son isn't home yet, but I am sure I will need all the support I can get! Tracey Arnold

  Visitor: Cheryl
Reference: Online Search
 Location: Ontario, Canada
  WebSite: 
 Web Info: 
  Contact: Cheryl.Spearman@MS.PSC-CFP.X400.GC.CA
     Date: Thurs, Jun 04, 1998 at 15:14:36 (EDT)

Comments: I am an adult, mother of two, living with pffd. I've never asked any questions about my disability, until now. I have been in a period of stability, in terms of prosthetics, for about 12 years (I basically ignore the physical disability). I receive a new VanNes pros. every 3 years that's about all the time\attention I give pffd. Once I found out what PFFD stood for, I did an on-line search. This has been very informative. I did not realize that there was a network of people. I wish this network was around when I was younger! Thank you!

  Visitor: Todd & Michelle Hickey
Reference: surfing the 'net for PFFD info
 Location: St. John's, Newfoundland, Canada
  WebSite: 
 Web Info: 
  Contact: todd_hickey@stratos.ca
     Date: Tuesday, May 26, 1998 at 23:07:18 (EDT)

Comments: Our beautiful son, Liam, was born Mar 25, 1998 and diagnosed with Unilateral PFFD of the right leg. All indications are that he has a good hip socket and the knee joint and lower leg look fine. Looking for info on alternatives for treatment. Would also like to hear from other parents in Canada with PFFD kids. Thanks for such a fantastic site! We found this site on the first day home from the hospital during our thirst for more information on PFFD. We cannot express how much this site has meant in our early introduction to PFFD. There are a lot of special people out there!

  Visitor: Marc Hoffman
Reference: my mom showed me
 Location: Boston Area
  WebSite: 
 Web Info: 
  Contact: mailforden@aol.com
     Date: Mon, May 18, 1998 at 21:35:08 (EDT)

Comments: I am 10 years old and I have PFFD in my left leg. I am 4 foot 5 and my left leg is 6 to 7 inches shorter. I have had many surgeries since I was 20 months old, but no lengthenings yet. I play baseball and am really good at rollerblading. I also take karate and am getting my brown belt in Jun. I have a bike that is customized for my leg. I have a prosthesis, but I don't wear it all the time. I have a very nice doctor at Children's Hospital in Boston. If anyone wants to e-mail me to talk about anything they can. I would like to talk to other kids my age with PFFD.

  Visitor: meg gross 
Reference: superkids
 Location: ripon, wisconsin
  WebSite: 
 Web Info: 
  Contact: mgross@cesa6.k12wi.us
     Date: Thurs, May 07, 1998 at 15:53:57 (EDT)

Comments: I just found out I have an address! My first entry doesn't have this. I really want to talk to someone. My son is also developmentally delayed and non-verbal. I didn't see the 20/20 show and wondering what it was about. My son also has problems with his airway and I'm afraid of the risk of surgury.I am very happy I found you!

  Visitor: meg gross
Reference: 
 Location: ripon, wisconsin
  WebSite: 
 Web Info: 
  Contact: 
     Date: Thurs, May 07, 1998 at 15:04:05 (EDT)

Comments: I have a 7 year old son with PFFD,Femoral Hypoplasia-Unusual Facies Syndrome, and a chromosome deletion on 2nd chromosome.

  Visitor: Denise Hoffman
Reference: yahoo
 Location: Boston Area
  WebSite: 
 Web Info: 
  Contact: mailforden@aol.com
     Date: Tuesday, May 05, 1998 at 23:36:01 (EDT)

Comments: My 10 year old son has pffd. His full height is @54'' with a 7'' discrepancy in left femur. No Van Ness, multiple osteotomies while awaiting future lengthenings. Would like to share a few things we found that may help other kids in his condition.

  Visitor: Linda Sedivy
Reference: searched the internet
 Location: Huntington Beach, CA
  WebSite: 
 Web Info: 
  Contact: rsedivy@aol.com
     Date: Wed, Apr 29, 1998 at 15:03:50 (EDT)

Comments: My 9 year old daughter will be going through the bone lengthening process this summer and we need all the support we can find.

  Visitor: Ruth Levine
Reference: 
 Location: Baltimore, MD
  WebSite: 
 Web Info: 
  Contact: RUTHL@IADB.ORG
     Date: Tuesday, Mar 31, 1998 at 17:29:46 (EST)

Comments: First, a great big thanks to the VSG manager for this wonderful resource. This site has been a source of information, inspiration and support since I discovered it last Oct. My one-year-old daughter, Sarah Michaela, has unilateral (left) PFFD with fibular hemimelia, with a projected differential of about 10-11 inches. We are fortunate to live in Baltimore, and so it didn't take long at all after her birth to find Dr. Herzenberg at the MCLLR, and to decide that (unless we hit an insurmountable roadblock at some point) we will pursue the lengthening option. She is just getting fitted with an AFO platform/extension brace tomorrow so she can walk, which she is eager for; she will start her pre-lengthening surgeries (hip and knee) in about 1-1.5 years. I would be pleased to be in touch with other parents (and PFFD kids of all ages) to share experiences. This is a long journey, and it's great to have some (virtual) friends along the way. I would be particularly happy to communicate with new parents. The first few weeks/months can be very difficult emotionally, and maybe talking to someone who has recently gone through it would be helpful. We would also be happy to provide information and other support to families coming to Baltimore for evaluation/treatment at the MCLLR. I will write again to let you-all know how Sarah is progressing.

  Visitor: Steve and Laurie Smith
Reference: long story!
 Location: Ontario, Canada
  WebSite: 
 Web Info: 
  Contact: sdsmith@heydon.com
     Date: Sun, Mar 29, 1998 at 17:24:44 (EST)

Comments: We are resigning the guestbook, because I guess our original entry was lost. I believe we were one of the Original Hits. We have contributed Holly's Story to the page, telling of our experiences with the Van Nes rotation. I would really love a response from some of the older guys/gals with PFFD who had lengthening. I am very interested in how exactly the lengthening stands the test of time. Aren't we lucky to have this site! Thanks again Mike Malloy and company.

  Visitor: Debbie
Reference: Search on Limb Lengthening
 Location: Jackson, Michigan
  WebSite: 
 Web Info: 
  Contact: MommyTo3@cybergal.com
     Date: Fri, Mar 27, 1998 at 23:37:28 (EST)

Comments: I just watched 20/20 that showed the procedure for limb lengthing. My son, born 8/10/95, has PFFD in his right leg. Right now, the difference in his legs is approximately 2 1/2 inches. I would appreciate any advice anyone can give. We have been seeing Ortho doctors at the University of Michigan Medical Center and they had told us that the lengthening wouldn't happen until he was 10 or 12. After seeing this show, I wonder if it is something we can do now.....

  Visitor: Bonni Klein
Reference: magazine with internet address
 Location: Baltimore,  MD
  WebSite: 
 Web Info: 
  Contact: kleinr@bellatlantic.net
     Date: Thurs, Mar 26, 1998 at 15:45:16 (EST)

Comments: My son, Charlie, was born in 1993 with PFFD. He has had 3 procedures, the last being a lengthening. We chose not to do the Ilazorvo (sp?) We were able to acheive 2.5 inches of length and are very happy. Please contact us if you have any questions.

  Visitor: kathy butina
Reference: looked up pffd
 Location: latrobe, pa
  WebSite: 
 Web Info: 
  Contact: xqrg@grove.iup.edu
     Date: Sun, Mar 15, 1998 at 23:47:23 (EST)

Comments: i was born with pffd and had my leg lengthened (8 inches) at dupont institute in wilmington delaware.

  Visitor: Rev. Robert C. Davis
Reference: Net Search
 Location: Herreid, South Dakota
  WebSite: 
 Web Info: 
  Contact: prcdrcus@valleytel.net
     Date: Tuesday, Mar 10, 1998 at 16:06:49 (EST)

Comments: Greetings, My Son who is eight has the same problem that your page deals with. I am a pastor in the Reformed Church in the United States.

  Visitor: Chuck, Karla, Dylan & McKenna
Reference: Someone up there really likes us....
 Location: Maple Grove, MN
  WebSite: 
 Web Info: 
  Contact: Grimbold@AOL.Com
     Date: Mon, Mar 09, 1998 at 20:12:49 (EST)

Comments: Dear Everyone, Hello!! We just returned from our visit with Dr. Paley, and we have some good news!! Our little McKenna has a type 1b, unilaterial PFFD in her right leg. Her femur is very short, but she seems to have a good hip, and knee. We will be going in for our first surgery in about 10/12 months, where they will fix the Bend at the top of her femur. After that, they will make sure the hip and knee can handle the lengthening, and by about age 3, with some luck, we should start the lengthening process. Thanks alot for all the help and prayers. If there is anything we can do, or any questions you might have, feel free to write us at Grimbold@AOL.Com, and we'll help you in any way possible!!!Thanks again!!! Sincerely, Chuck, Karla, Dylan, & McKenna

  Visitor: Chuck, Karla, Dylan & McKenna
Reference: Someone up there really likes us....
 Location: Maple Grove, MN
  WebSite: 
 Web Info: 
  Contact: Grimbold@AOL.Com
     Date: Mon, Mar 09, 1998 at 20:04:13 (EST)

Comments: No comment at this time.....

  Visitor: Tony Giordano
Reference: Dr. Herzenberg informed me of the website.
 Location: Long Island, NY
  WebSite: 
 Web Info: 
  Contact: ajchr2169@aol.com
     Date: Mon, Mar 09, 1998 at 16:51:21 (EST)

Comments: Thank God you folks have this site. It is encouraging to see people helping each other. My wife and I are still in the process of making a decision and these materials will help.

  Visitor: Krystine Hilton
Reference: 
 Location: Toms River, New Jersey
  WebSite: 
 Web Info: 
  Contact: mfj@adelphia.net
     Date: Sun, Feb 15, 1998 at 12:14:53 (EST)

Comments: Hi Everyone: I jjust wanted to let you know how much I appreciate having somewhere to go to say how I feel. I'm going to send out another letter to all of you soon, to let you know of our progress. Thanks for all the support! God Bless! (Dylon Mager's Mama) Sincerly Krystine Hilton

  Visitor: Krystine Hilton
Reference: 
 Location: Toms 
  WebSite: 
 Web Info: 
  Contact: 
     Date: Sun, Feb 15, 1998 at 12:11:48 (EST)

Comments: No comment at this time.....

  Visitor: John Herzenberg, MD
Reference: 
 Location: 
  WebSite: 
 Web Info: 
  Contact: 
     Date: Tuesday, Feb 03, 1998 at 01:57:19 (EST)

Comments: No comment at this time.....

  Visitor: Solveig & Brian Sansom
Reference: A very lucky search!
 Location: Devon, England
  WebSite: 
 Web Info: 
  Contact: bks@eclipse.co.uk
     Date: Wed, Jan 21, 1998 at 10:36:01 (EST)

Comments: Thank you so much for sharing all your experiences. Our daughter Poppy has unilateral PFFD (left leg). She was born 14th Jul 1997. We are still taking advice as to what course of treatment to choose. We want to ensure we make the best choices for our daughter's future, but information in the UK seems to be limited compared with what I have found on this website. Your stories have been both uplifting and heart-rending, thank you once again.

  Visitor: Tracey Arnold
Reference: 
 Location: Penna.
  WebSite: 
 Web Info: 
  Contact: arnoldin@toolcity.net
     Date: Tuesday, Jan 20, 1998 at 21:49:09 (EST)

Comments: Dear Friends; I wanted to personally thank everyone that took the time to write to us regarding our (soon to be adopted) son who has PFFD. I was quite amazed at the volume of the letters offering support and encouragement, in addition to personal phone numbers and addresses! We feel so blessed to have found such a wonderful group of people who have opened their hearts to total strangers for the benefit of a child! The bulk of the responses have recommended Dr. Paley and have given him very high respect in his field. After talking things over with my husband and our family Dr., we feel that he is our best choice. I will hold onto the phone numbers and names pending the arrival of Kolya to America. At that point I will be sure to use them! Please feel free to contact us if you are able to find more information regarding PFFD and how your children are dealing with the treatment. Thank you so very much. I am so thrilled to know that so many people care! Ron and Tracey Arnold

  Visitor: Joann Bilek
Reference: net search on pffd
 Location: Battle Creek, Michigan
  WebSite: 
 Web Info: 
  Contact: joann_bilek@spartanstores.com
     Date: Tuesday, Jan 20, 1998 at 15:09:11 (EST)

Comments: My niece Jamie was born with PFFD. She is 2 1/2 years old and will be undergoing the Van Nes procedure this year. We were looking for more information.

  Visitor: Katrina D. Rhoda
Reference: 
 Location: Baltimore
  WebSite: 
 Web Info: 
  Contact: JRhoda7619@AOL.com
     Date: Sun, Jan 18, 1998 at 15:30:50 (EST)

Comments: Hi, my name is Katrina Rhoda and I have PFFD. I am 18 years old and have had multiple lengthenings by Dr. Dror Paley. I'll be happy to answer any questions any of you might have for me, since I have been through what most of your children are facing.

  Visitor: Tracey Arnold
Reference: Web search for 'Birth Defects'
 Location: Penna.
  WebSite: 
 Web Info: 
  Contact: arnoldin@toolcity.net
     Date: Sun, Jan 11, 1998 at 22:53:27 (EST)

Comments: We are trying to adopt a little boy from Russia that has this disorder. He is soon to be seven. Can anyone reccomend anything to do to help him?

  Visitor: Frank Gratke
Reference: 
 Location: South Milwaukee,WI
  WebSite: 
 Web Info: 
  Contact: gratke@execpc.com
     Date: Sun, Jan 04, 1998 at 21:09:14 (EST)

Comments: Kevin,Born 5/5/93 unilaterial PFFD aiken Class D Medical: get Brace, wait before van ness or lenghting.

  Visitor: Sara Spalsbury
Reference: my new computer!!
 Location: Kalamazoo, Mi
  WebSite: 
 Web Info: 
  Contact: Smallzey@aol.com
     Date: Fri, Jan 02, 1998 at 12:16:57 (EST)

Comments: I am already listed on here through someone else's e mail, However I now have my very own. I would very much like to communicate with other adults with Pffd. I am 23 yrs. old and I have level 4 pffd in both legs. My life is wonderful and I am truly blessed. I would be more than happy to talk with others, or just listen. Please contact me anytime.

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