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Date October 4, 2006
Name Adriene Taylor
Email adrieneangel@yahoo.com
Home Page
City / Town St. Louis
State / County MO
Country USA
Comments My daughter just turned 3 on 9-11-03 and it was about this time last year when I was last at this web site. Since then, she has been through a lot. She has been on Eckmo, has a tracheostomy, and has currently been placed on the ventilator for the purpose of CPAP which causes positive airway pressure. She is so strong and we love her dearly. She is currently hospitalized and the doctors experimented with the use of the passy-muir speaking valve to help stint her airway open. She has done great on passy-muir, but the doctors fear her safety if the speaking valve gets clogged. That is why they are trying the CPAP. I hope this information can be of some use to someone out there struggling with this syndrome. Remember to pray. My daughter has stopped breathing twice in the last three months. We know that it is by the Grace of God that she is still here. We are never giving up and neither should any of you.




Date August 26, 2005
Name Adriene Taylor
Email adrieneangel@sbcglobal.net
Home Page
City / Town
State / County Missouri
Country USA
Comments My daughter has been diagnosed with MNS. She will be two years old 9-11-03 and your site has offered more information than any doctor in Missouri has been able to give me. Thank you. My daughter recently had a surgery called Mandibular Distraction to bring forth her lower jaw. She is now eating and breathing better. She is also gaining weight now. Thank you.




Date December 6, 2004
Name amanda russell
Email peachesandkeith@persona.com
Home Page
City / Town
State / County newfoundland
Country canada
Comments my neice Caroline has mns .her mother has been in contact with a couple of families but always welcomes anyone who could offer support or information, you can never get enough when it comes to something so rare.Caroline is having a down time right now we wish her well soon. she is the greatest love we have ever known..




Date October 2, 2008
Name Amy
Email anhaight@hotmail.com
Home Page
City / Town
State / County
Country USA
Comments I am a student writing a paper on MNS and would love to have additional info or links, if you have the time! Thanks




Date April 8, 2006
Name ashleigh mcmillan
Email
Home Page
City / Town
State / County nsw
Country australia
Comments i have melnick needles symdrome.diagnosed 1990.i'm nearly 19yrs having being born in 1987.




Date September 12, 2004
Name Aymie carter
Email
Home Page
City / Town
State / County
Country england
Comments hello.




Date October 4, 2006
Name carolyn smallwood
Email cnsmallwood@yahoo.com
Home Page
City / Town cincinnati
State / County ohio
Country
Comments Does anyone here with MNS have children without it?




Date October 1, 2006
Name carolyn smallwood
Email cnsmallwood@yahoo.com
Home Page
City / Town cincinnati
State / County ohio
Country
Comments I'm 23 and i was diagnosed with MNS on August 3, 2006. I have not seen a dr since my diagnosis. I was 5 months pregnant when i had my first ultrasound and there were some anomalies and i was scheduled to see a genetic dr on Aug. 3 2006. My own facial features and leg bones were questioned during the ultrasound and they thought it might be related to the features of my baby. Unfortunately, when i went for a regular check up 2 weeks later, there was no heart beat. My boy did not survive. My genetic dr set me up with a research lab in Iowa. It could be 6 months to a year before i know the results. I don't know where to go from here? I've always known i was different but didn't know how to approach it i guess. My heart aches. I'm suppsed to be 8 months pregnant and having a son next month, now i don't know that i will ever have healthy kids...




Date June 20, 2008
Name charmaine bugden
Email playgirlmaine80@hotmail.co.uk
Home Page
City / Town chatham
State / County kent
Country uk
Comments i have a cousin with mns i'm glad some1 is trying 2 made all aware of the syndrome. my cousin sadly passed away in 2006 aged 14 with complications regardin the syndrome. it would be nice to know how ur daughter is doing from time 2 time. best wished charmaine bugden




Date March 4, 2004
Name Christina Scott
Email pooh_piglet86@hotmail.com
Home Page
City / Town Ebensburg
State / County PA
Country U S A
Comments Thank you for all the information you provided on this site and for sharing your family's story. This is the most infomation I have ever gotten on Melnick Needles. My daughter has this sydrom and we have been pretty much in the dark all these years. I would appreciate any and all information you can send me thank you Christina




Date December 5, 2006
Name D. Goedbloed
Email daantjuh10012@hotmail.com
Home Page
City / Town
State / County
Country The Netherlands
Comments I'm 19 and diagnosed with MNS when I was 3 years old. Far as I know I'm the only person with MNS in my country and because of that I'd like to be in contact with people who have MNS. I think this website is a very good initiative to get more information about the syndrome. If you have MNS (or if you know somebody with the syndrome) and want to share experiences and stories please sent me an e-mail. I would be very glad to have contact with people who have MNS!




Date September 30, 2011
Name Derek B
Email
Home Page
City / Town
State / County Alberta
Country Canada
Comments Hello everyone! I am Derek, and I was diagnosed with MNS when I was three. Apparently, I have a mutation of the mutation, which I guess I have to thank for being alive. I have done research myself on MNS, and it feels cool yet weird that almost every symptom I possess. Throughout my life, I have had surgeries in Texas for my scoliosis and kyphosis, and I am happy to say that this summer, I will be fused and it will be all over. Thanks for the wonderful website! God Bless :)




Date September 14, 2007
Name dr.saba asif
Email sabamanghi1234@yahoo.com
Home Page
City / Town karachi
State / County
Country pakistan
Comments the information provided in this text is really useful.it really helped me alot in managing my patient. can u provide some recent information regardind the chromosomal analysis and any recent advancement regarding its treatment and prognosis.




Date March 31, 2007
Name Gil
Email
Home Page
City / Town
State / County
Country uk
Comments If you would like to speak to someone personally, please use the telephone number listed. If you are like me, I would rather speak to someone 'face to face'. If I am not around, you can leave a message on my answserphone. Again, if like me you hate these machines , please do not hang up, but leave your name and telephone number and that you are wanting to speak to me about MNS. I will call you as soon as is possible. Much love to you Gill. x




Date November 29, 2006
Name Gill
Email
Home Page
City / Town
State / County
Country UK
Comments Hello everyone. This is not the way I wish to speak with you, but I am having a few problems!!! I am having to speak to you all this way because I am having problems with my computer. It seems, that some other abnormalities have surfaced since the site began - more reportedly, hip/ankle problems - these have usually been associated with FMD (Frontometaphysial Dysplasia- normally shown in boys and as a cousin of MNS. Spinal and Mandibular (spine and Jaw) operations seem to be happening more regularly and hip dysplasia is more common(as far as I am aware, this is also a problem with FMD). As usual, pneumonia, chest and ear infections are most common - in pneumonia, unfortunately, this is more fatal than the disease itself! It is a very strong attachment to the condition, due to the lung function in sufferers and has to be kept in check, especially in the very young. I cannot stress enough, as stated in my report on Aymie, that any cold can kill. Colds can be regulated, but it can so quickly turn to pneumonia. I have had m




Date March 26, 2006
Name Gill
Email
Home Page
City / Town
State / County
Country
Comments I shall be going away for approximately 3 weeks for a holiday, and you can contact me around 15th April. If anyone has contacted me recently or would like to repost an email, please do so. I do not get on the website as often as I need to, but will reply to anyone and everyone when I return. If you call is urgent, you can telephone me on the number sited on the information page up until 6pm on Tuesday 18th March or can contact me on 15th April. I hope to contact everyone who has posted a message in the guestbook by the end of April. If you would all in the meantime say a prayer for the McInnes family, who have lost a very vital member of their family in the last week to MNS and it's problems, I would be most greatful. Our thoughts and prayers are with them and their extended family for Caroline - Sadly and tragically taken from them, but most certainly not forgotten. God Bless you all. Gill. x




Date March 2, 2006
Name Gill
Email
Home Page
City / Town
State / County
Country UK
Comments Please if you have posted a message, contact me again. I have been away for a while but promise that I will return your message as soon as possible. At this time, you will more likley have an answer if you telephone me on 01414 217790 or if you are outside of the UK 44-1424 - 217790. Please telephone on Sunday 5th March 2006 if you would like to speak to me personally. I am aware that many of you have signed the guestbook and have not yet had a reply. I hope to make this possible on Sunday. I hope to speak to you soon. Gill.




Date March 2, 2006
Name Gill
Email carter0609@hotmail.com
Home Page
City / Town
State / County
Country
Comments having trouble with my email. you can reach me on this email address. anyne who has a message or question can reach me at this address or preferably speak to me 1-1 by telephoning me on 44 - 1424 - 217790 on Sunday 5th March 2006 after 11.00am. I will speak to as many of you as is possible. Gill.




Date May 24, 2005
Name Gill
Email
Home Page
City / Town
State / County
Country
Comments Hello to everyone who has signed our guestbook. I'm sorry if I haven't gotten around to replying yet, but we have had health problems in our family and have just recently suffered the loss of my Father and Aymie and Faye's Grandfather. I will contact everyone at some point soon, when things have settled down. Please do not think that you have been forgotten. If your call or enquiry is urgent, you can call the telephone number and leave a message on the answerphone. In the meantime, I thank you all for your patience. Gill. x




Date March 31, 2007
Name Gill
Email
Home Page
City / Town
State / County
Country UK
Comments I must apologise to those of you who have genuinly visited this website for information or help, and have encountered, shall I say, less than appropriate messages for something other than the help you need. We are monitoring these messages as much as possible and remove them as soon as is possible. Unfortunately, there is not at present, a programme to delete these advertisements before they appear. Please ignore them and hope that upon their deletion, they get the message that they are not wanted or invited to advertise their wares. These people are unscrupilous and very much unwanted on this website as I am sure you will agree.




Date March 31, 2007
Name Gill
Email
Home Page
City / Town
State / County
Country uk
Comments I have to apologise to those of you who have posted a message and are expecting a message from me. I have had a few problems concerning the website and have also suffered 3 deaths within the family, since I last posted a message from this site. Can I say that it is very nice to see messages from those of you who have visited the site, and that because of the computer problems I have had, if you need personal help or information, please, use the telephone number given on the contact site. Sometimes, it is a lot easier to speak on the telephone than to write to you via email, also you get your information at the exact time that you need it. At the moment, emails do not seem to be getting to me and i am not sure of the reason for this. I apologise. If you are requiring instant information or, like me, would rather speak to the person you are contacting me, please use the telephone number.... I know that sometimes this is more expensive for you, but I guess it depends on how desperate you are for the information you crave and if lik




Date November 7, 2007
Name Gill
Email
Home Page
City / Town
State / County
Country UK
Comments Yes people, the McInnes' are correct. Recent information received just recently by me does indeed identify Filamin A as a breakthrough for the genetic culprit of MNS. I've been pipped at the post in letting you all know. If any professional wants more information, please contact me using the contact details listed on this site. Gill.




Date February 6, 2008
Name Gill
Email
Home Page
City / Town
State / County
Country UK
Comments If you have signed the guest book and not received a reply from me, I apologise. Please post a message stating 'No message received' and I will contact you as soon as possible. Please accept my apologies for not replying sooner. I will explain some reasons for this in my answer to you. Gill. x




Date April 11, 2012
Name Gill
Email gilldysp@btinternet.com
Home Page
City / Town Bexhill
State / County East Sussex
Country England
Comments




Date July 4, 2006
Name GILLIAN CAMPBELL
Email
Home Page
City / Town
State / County
Country uk
Comments To Ashleigh McMillan - Austrlia. Please Ashleigh, leave your email address or telephone number so that I can contact you.