Contact / Guest book

Please sign the guest book! You can do it by cliking on " skriv besked". Thanks!!

Skriv besked...
31/08-2009
Hi! My name is Wendy, and I'm from Holland. My sister has Gryscelli, and she's 13 years old! She's the only one in Holland , so the doctors hasn't got many information about the syndrome. They thought she didn't survive, but she's strong and she's still alive! but mabye my sister need an bone marrow transplantation, so they will look if I could be a donor for her Wendy
31/08-2009
Despues de varios meses encontre informacion de rebecca y cuando vi la foto publicada me asombro el parecido de Rebecca con Valentina nuestra hija. A mi bebe le detectaron el griscelli cuando ya se le habia despertado el s.hemofagocitico.fueron 25 dias de mucha angustia con mucha medicacion y era imposible el tranplante de medula ya que Valentina no tenia mas defensas ,ni cuagulacion.Fue todo tan rapido .A todos le llamaba la atencion el color del pelo pero a ningun medico se le ocurrio que podia ser una enfermedad.eso me indigna mucho,porque si se hubiesen dado cuenta desde que nacio hubiese tenido la posibilidad que vos tuviste con Rebecca y la tendriamos hoy con nosotros. Vos me comentas que hay un estudio para hacerle al bebe para saber si es portador del sindrome. Pero yo queria saber si es antes o despues del nacimiento. Los donantes de Rebecca fueron alguno de ustedes?. Te agradesco que me allas escritos Cariņos a los tuyos Mariana y santiago Buenos Aires Argentina mariana y santiago
brasalenios@fullzero.com.ar
31/08-2009
visitamos esta pagina porque nuestra hija de un aņo fallecio por el sindrome griscelli y sindrome hemofagocitico en febrero de este aņo y queriamos ver si los papasque pasaron por lo mismo que nosotros habian intentado tener nuevamente un hijo MARIANA
31/08-2009
Hi, As a basic scientist (working on myosin-Va, among other motor proteins), I can intellectually, but rarely emotionally, attach my own research with its potential impact on human disease. You're website, which I stumbled across today looking for something else on Griscelli syndrome, really, really hit home for me. I wish you and your family all the best. Mark Mooseker Mark Mooseker
31/08-2009
Hello, I have just learned that my 1 year old son may have the MYO-VA related Griscelli's Syndrome. He was diagnosed with Occulatenous Albinism at about 4 months of age but also has hypotonia which is not explained by the diagnosis of OCA...so we are waiting to find an answer. The doctor's are searching for a lab that can perform a test to determine whether he has it. Thank you for your website...there is very little out there about this syndrome. Good Luck and many blessings. April Sullivan
31/08-2009
I've just revisited your site to see how things are going. Lovely to get news of Rebecca. We still haven't heard of anyone else in the UK with Griscelli Syndrome. Best wishes to all the family. The McGugan Family Sally McGugan
31/08-2009
Hello! I'm writing from Canada where, today I came upon your website of your daughter's BMT for Griscelli's Syndrome. To say I was suprised was an understatment. For the past 11 years my son, Connor, has struggled with what our doctors have termed "a variation of Griscelli's syndrome". Why "variation"? Because while my son has silvery hair, the biopsy has always come back negative for the uneven pigment granules. He does not have Chediak-Higashi Syndrome. He had, until his BMT 3 years ago, the accelerated phases with the predictable pattern which were, well for the lack of a better way of saying it, killing him. They think this "variation" is a less aggressive form and this is why he made it to seven before the BMT became the last resort. Because the hair shafts do not fit the pattern for Griscelli's Syndrome, Dr. Griscelli has refused to have anything to do with his case because it was not his syndrome. Up until November of last year, we did not even know that there might be others with variations of it until our immunoligist found a paper questioning if there is such a thing. After saying all that, I just wanted to thank you for having a website on this condition. It's nice to know that there is someone else who has witnessed this progression. Thank you and I will pray for your family and your little girl. Jackie Hood Jackie Hood
31/08-2009
I just wanted to thank you for your wonderful web site. I am a dentist at Children's Hospital, Boston and am treating a 5 year old girl with Griscelli syndrome. Your web site was very helpful in getting at current information about the syndrome, as well as very touching. Thank you again, Dr. Jessie Schwarz Dr. Jessie Schwarz
31/08-2009
Hello Kit Rubini Hansen! Thank you very much for your information about new website about the Grescelli syndrome. I rember, when Jens Ole asked us about the syndrome, which we do not know nothing about and I think, it was an awfully situation for you - first to lose a child and now to get a child,whom you also could lose. I contacted CSH doctor John-Erik Stig Hansen, who also sent you and me a short information. Now I am very glad to read about your daughter`s succesfully tranplant and look the photos with a nice girl. Best regards and good luck!! Dansk forening for Albinisme Merry Møller Hansen sekretær
31/08-2009
Dear Kitt, Thank you. We have created a link and will feature Rebecca in our newsletter. Thanks, Julie Gordon MUMS
<< 1-10 11-20 21-30 31-40 41-50 51-60 61-70 71-80 [ 81-90 ] 91-100 >>
kitt hansen