Guest guest Posted October 31, 2000 Report Share Posted October 31, 2000 Hello Rhonda and family welcome to the crew!!! This is a great place for support and expert advice from those that have been there and done that. It sure helps to know that others know what your talking about and can relate to what you are going through. Ask away!!!!! Marnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2000 Report Share Posted October 31, 2000 Welcome to the crew Rhonda I'm Marcus from Australia and have two boys aged 13 and 6 with NF2 Oh I do too ! ( almost forgot ) I'm sure you will meet some very helpful people here Marcus Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2000 Report Share Posted October 31, 2000 Welcome to the crew Rhonda I'm Marcus from Australia and have two boys aged 13 and 6 with NF2 Oh I do too ! ( almost forgot ) I'm sure you will meet some very helpful people here Marcus Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2000 Report Share Posted November 3, 2000 Welcome to Rhonda! Hugs from Lori Jo in MI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2000 Report Share Posted November 3, 2000 Welcome to Rhonda! Hugs from Lori Jo in MI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2000 Report Share Posted November 5, 2000 Dear Rhonda, Welcome to the Crew. We are a great place to share about troubling situations, doc and disorder news, and anything that your heart is burdened with. I recall when my daughter (now 27) was diagnosed at age 15. It was unbelievably wrenching news. Especially then because no one had even heard of it and sent us to Houston for the only place to give any answers. Anne is a mutation too. Our family listens a little, her brother listens a lot. But it is so painful that I don't think they want to hear what is the truth. The truth is: None of us like the truthful situation. But the parents must stand by and step forward in our children's behalf. Others can hide away if they like. You seem like a step forward person in your son's interest. Remember it may not progress, there are many new experimental treatments, and get all the info that you can about the disorder. Do not rely on the doctors because they generally do not know that much. If you'd like to e-mail me directly, please feel free to do so. Rhonda take care of yourself so that you can be your best for keeping his spirits lifted and informing all in contact with him and your family about the disorder. the more exposure, the closer we come to a cure. Ciao, Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2000 Report Share Posted November 5, 2000 Dear Rhonda, Welcome to the Crew. We are a great place to share about troubling situations, doc and disorder news, and anything that your heart is burdened with. I recall when my daughter (now 27) was diagnosed at age 15. It was unbelievably wrenching news. Especially then because no one had even heard of it and sent us to Houston for the only place to give any answers. Anne is a mutation too. Our family listens a little, her brother listens a lot. But it is so painful that I don't think they want to hear what is the truth. The truth is: None of us like the truthful situation. But the parents must stand by and step forward in our children's behalf. Others can hide away if they like. You seem like a step forward person in your son's interest. Remember it may not progress, there are many new experimental treatments, and get all the info that you can about the disorder. Do not rely on the doctors because they generally do not know that much. If you'd like to e-mail me directly, please feel free to do so. Rhonda take care of yourself so that you can be your best for keeping his spirits lifted and informing all in contact with him and your family about the disorder. the more exposure, the closer we come to a cure. Ciao, Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2000 Report Share Posted November 5, 2000 Dear Rhonda, Welcome to the Crew. We are a great place to share about troubling situations, doc and disorder news, and anything that your heart is burdened with. I recall when my daughter (now 27) was diagnosed at age 15. It was unbelievably wrenching news. Especially then because no one had even heard of it and sent us to Houston for the only place to give any answers. Anne is a mutation too. Our family listens a little, her brother listens a lot. But it is so painful that I don't think they want to hear what is the truth. The truth is: None of us like the truthful situation. But the parents must stand by and step forward in our children's behalf. Others can hide away if they like. You seem like a step forward person in your son's interest. Remember it may not progress, there are many new experimental treatments, and get all the info that you can about the disorder. Do not rely on the doctors because they generally do not know that much. If you'd like to e-mail me directly, please feel free to do so. Rhonda take care of yourself so that you can be your best for keeping his spirits lifted and informing all in contact with him and your family about the disorder. the more exposure, the closer we come to a cure. Ciao, Vicki Quote Link to comment Share on other sites More sharing options...
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