Yes, There is so much more to ALD then what the movie shows. Some peoplethink i am joking when i tell them that it is a condition that not many doctors know about and most times it is to late to help a child when they find out the child has it. I was luck to find out when I was pregnant. I may not be happy with my mother for keeping it from me after asking her about any other health problems in the family when i first found out i was pregnant. But,I had no intention on aborting my son because he was sick. It just made me understand that mericals come in small packages. He is such a good kid ( as good as a 5 year old can be ). My mother was selfish, and felt that her life was none of my business. She wouldnt tell me much about my dad at all, he was the one that passed the condition to me. It is passes father to daughter, mother to son. I lived with her while I was pregnant, and she was selfish about everything about our family. I would ask a question and should would tell me she cant tell me about it. She left town 2 months after my son was born. It was her choice. I have talked to every program I could to get help. I am doing this alone. Maybe i am selfish myself too. But, this is not easy. I am 27 years old, and doing this. But, I am making it. My son is what keeps me going. When I had Harley I knew nothing about ALD and now i know more then most of his doctors and most of them dont understand me and have to go back to books and look. There really isnt much out there for anyone to study. They are still in the early stages of undestanding this disorder. My son goes to a medical study in Baltimore, MD. at Kennidy Kreiger Hospital once a year. It takes 3 days. I hate traveling. I was hoping to find a doctor that is local that would be willing to take on a study here. But, I have not had much help. I am alone in this. I live in Vermont, right next door to University of Vermont Medical School, and no one has an intrest in studing this condition locally. I am also, as far as we know, the only family in Vermont that has this condition. I have tried to find a family local that I could share support with. Many of my friends have no clue what I am talking about. I gave up on trying to get help for me. I just want Harley to have all the help he can get. I do ask that if there is anyone in my area that has this disorder please feel free to contact me. I am in Burlington, Vermont.
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Yes, There is so much more to ALD then what the movie shows. Some peoplethink i am joking when i tell them that it is a condition that not many doctors know about and most times it is to late to help a child when they find out the child has it. I was luck to find out when I was pregnant. I may not be happy with my mother for keeping it from me after asking her about any other health problems in the family when i first found out i was pregnant. But,I had no intention on aborting my son because he was sick. It just made me understand that mericals come in small packages. He is such a good kid ( as good as a 5 year old can be ). My mother was selfish, and felt that her life was none of my business. She wouldnt tell me much about my dad at all, he was the one that passed the condition to me. It is passes father to daughter, mother to son. I lived with her while I was pregnant, and she was selfish about everything about our family. I would ask a question and should would tell me she cant tell me about it. She left town 2 months after my son was born. It was her choice. I have talked to every program I could to get help. I am doing this alone. Maybe i am selfish myself too. But, this is not easy. I am 27 years old, and doing this. But, I am making it. My son is what keeps me going. When I had Harley I knew nothing about ALD and now i know more then most of his doctors and most of them dont understand me and have to go back to books and look. There really isnt much out there for anyone to study. They are still in the early stages of undestanding this disorder. My son goes to a medical study in Baltimore, MD. at Kennidy Kreiger Hospital once a year. It takes 3 days. I hate traveling. I was hoping to find a doctor that is local that would be willing to take on a study here. But, I have not had much help. I am alone in this. I live in Vermont, right next door to University of Vermont Medical School, and no one has an intrest in studing this condition locally. I am also, as far as we know, the only family in Vermont that has this condition. I have tried to find a family local that I could share support with. Many of my friends have no clue what I am talking about. I gave up on trying to get help for me. I just want Harley to have all the help he can get. I do ask that if there is anyone in my area that has this disorder please feel free to contact me. I am in Burlington, Vermont.
August 11, 2009 - 11:13amThis Comment
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