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Nicholas Attard
Hello. We are presently in the UK recovering from Dec 18 BMT. Matthew is doing very fine except for some mild GVHD. Nicholas Attard Malta

I have my 7 weeks old daughter being tested and examined for the griscelli. Your diary gave me my first comfort after 2 weeks of crying and despare. may God be with you and all your family. Geoffrey Cutajar

hope you have a long happy life Dear Rebecca. Baran

hi rebecca how are you we are in hospital with mariah when you came to malta mariah was playing with you.after you left malta mariah fell very sick and now we are waiting for a doner we hope and pray that the transplant goes well take care hope that when you come back to malta mariah will play with you again god bless michael vella

I am professor Griscelli ,still working in heath area partly in Necker hospital in Paris I discover you today . I am very happy to learn the successful bone marrow transplantation . Rebecca is a beautiful girl . I wish you a long and nice life Yours sincerely Claude Griscelli

rebecca, I am a person trainibg with Dr.gahl, a cool guy who loves rare disorders. I considered myself very lucky to be training with him. Hope thigs go well for you and family. esperanza Bethesda, MD

Hello Rebecca I am a Senior Biology Student at Albany State University in Albany Georgia. I am doing a research paper on Griscelli Syndrome. Your Story has really helped me in my research and I am glad to read that you are doing so well. You are a miracle and I hope you continue to live healthy and strong. God Bless Courtney P.

Hi, my name is Ingrid. I'm a brazilian student and I'm just finishing my master degree. I study the Griscelli Syndrome. I have two patients with this disease. Well, as you must know, this is a rare disorder and many people don't know anything about it. So, now I'm creating a homepage in portuguese to spread information to the people and doctors in my country. I really liked your homepage. It's a wonderful idea and iniciative. So, I want to ask if I can put a link of your homepage in my web so people can visit it. It would be wonderful if the people could see your daughter and read about her story. By the way, she is beutiful! So, I'll wait for an answer. And sorry for my terrible english. God bless you and Rebecca. Ingrid Porpino Meschede

Hi Rebecca, thank you for putting your story online. Thank to your parents as well. I am Maria the mother of Elizabeth who is also a Griscelli Baby. She will be eleven months old next Monday. We are waiting to go to England to have the transplant done when a donor is found for her. Seeing how well you have done encourages me and my husband, who is Elizabeth's father very much. we love you and we hope to get to know you more. Maybe one day after Elizabeth is well we meet. Take good care of yourself and keep well maria and charles and elizabeth from Malta Maria Barbara

This was the first site that explained Griscelli syndrome so that a layman could understand. Thank you very much. Our friends' 3 yr old grandson has been diagnosed with this. They are talking about marrow transplant now. We pray that he does as well as Rebecca has. Thank you very much and continued health and happiness for Rebecca and family. Karin Reynolds

Thank you for this information on Griscelli Syndrome and the treatment. The diary is very insightful and it gives us hope that our prayers of recovery will be answered. God Bless, Adam Jack Adam Jack

Thank you for sharing this success story. Our grandson had the hlh, and chemotherapy and cord blood transplant. His hair was brown, but now, there are several spots in the back of his head that are grey, and so this syndrome has been thought of. Do you think that he could have this syndrome all the time instead of the hlh? Does the silver hair start with a few strands? He seems to be getting more and more. Thank you again for your webpage and for any suggestions or ideas. carolyn

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

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 Cariños a los tuyos Mariana y santiago Buenos Aires Argentina mariana y santiago

visitamos esta pagina porque nuestra hija de un año fallecio por el sindrome griscelli y sindrome hemofagocitico en febrero de este año y queriamos ver si los papasque pasaron por lo mismo que nosotros habian intentado tener nuevamente un hijo MARIANA

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

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 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

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

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

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
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

Dear Kitt, Thank you. We have created a link and will feature Rebecca in our newsletter. Thanks, Julie Gordon MUMS

To the Hansen family: Many thanks for letting us know about the website you have created about and for your daughter and for others. I'll forward the details to the National Alliance Committee of Rare Disorders Belgium. All the very best to you. Karen Jane TURNER Secretary of the National Alliance Committee Rare Disorders Belgium - RDB Karen Jane TURNER

Dear Kitt: Thank you very much for letting me know about the web link. It is fantastic and very useful that you took the time to do all this work. Yours, MIGUEL ______________________________________ MIGUEL ZEBRAE

Dearest Hansen-family! What a wonderful letter of life and love of a sympathetic family. We all wish you the best for your children and family. You should ask Alain Fischer from Paris to send you a photograph of Claude Griscelli; he is a very French person: full of ideas, full of laughter, full of love for children. I have the favor to know him since 1972 when we met on one of the first immunodeficiency conferences in Florida. At that time only a few doctors knew of these diseases, and only a few number of diseases were known either. Progress has been tremendous, and one should say, that the group of Claude Griscelli and Alain Fischer have really been the leading scientists and pediatricians in the world to the possibilities of treatment and genetic understand that we can refer to today. Our transplanted little patient in Munich is doing fine! May be, all these children should have with your help a party - via e-mail! Yours Bernd H.Belohradsky Bernd H.Belohradsky
kitt hansen