hope you have a long happy life Dear Rebecca.
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
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
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.
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
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
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.
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
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.