Guest guest Posted May 27, 2002 Report Share Posted May 27, 2002 Sharon I think it could appeal to anyone. I think there would more book sales and reach a larger population. Thanks for the idea. mom to Colby 12, COX IV, LCHAD, ADHD, Chad 14 healthy, Caleb 9 also healthy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2002 Report Share Posted May 27, 2002 Sharon, I understand your point,but if we want to use the book as a fundraiser for UMDF, I just thought stories about Mito disease would be more acceptable. However, if anyone out there would like to send in stories/poems/etc. about other diseases and hardships I would be willing to make a collecton of those and try create a book of those as well. I would be happy to do that. But if your child has suspected mito I feel that th ose stories'poems etc could be included in the UMDF Fundraising book. If others want to comment on this please let me know. And then we will have to decide what organization the profits will go to. I am all for publishing any story. Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2002 Report Share Posted May 27, 2002 me too! mom to Colby 12, COX IV, LCHAD, ADHD, Chad 14 healthy, Caleb 9 also healthy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2002 Report Share Posted May 27, 2002 The book is an awesome idea! I think it should be a combination of poems, stories, struggles and triumphs of mito families from the youngest to the oldest. Maybe including travel and vacation places that mito families could enjoy. Airline travel info, school struggles and stratigys....boy this book could be large! Hope it would be a wealth of information for family members of those affected and those too that do not understand the disease. Could list mito doc info also! I will go cause my list keeps getting longer....can you tell I am really excited about this!!??? Haqve a great week all! Horsley leehorsley@... Re: the book Sharon,I understand your point,but if we want to use the book as a fundraiser for UMDF, I just thought stories about Mito disease would be more acceptable.However, if anyone out there would like to send in stories/poems/etc. about other diseases and hardships I would be willing to make a collecton of those and try create a book of those as well. I would be happy to do that.But if your child has suspected mito I feel that th ose stories'poems etc could be included in the UMDF Fundraising book.If others want to comment on this please let me know. And then we will have to decide what organization the profits will go to. I am all for publishing any story.Robin Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2002 Report Share Posted May 27, 2002 The book is an awesome idea! I think it should be a combination of poems, stories, struggles and triumphs of mito families from the youngest to the oldest. Maybe including travel and vacation places that mito families could enjoy. Airline travel info, school struggles and stratigys....boy this book could be large! Hope it would be a wealth of information for family members of those affected and those too that do not understand the disease. Could list mito doc info also! I will go cause my list keeps getting longer....can you tell I am really excited about this!!??? Haqve a great week all! Horsley leehorsley@... Re: the book Sharon,I understand your point,but if we want to use the book as a fundraiser for UMDF, I just thought stories about Mito disease would be more acceptable.However, if anyone out there would like to send in stories/poems/etc. about other diseases and hardships I would be willing to make a collecton of those and try create a book of those as well. I would be happy to do that.But if your child has suspected mito I feel that th ose stories'poems etc could be included in the UMDF Fundraising book.If others want to comment on this please let me know. And then we will have to decide what organization the profits will go to. I am all for publishing any story.Robin Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2002 Report Share Posted May 27, 2002 I am really excited about it. I was thinking of asking Dr. Korson, Dr. Shoffner and Dr. Cohen to write something too. Who ever is interested let me know. We'll throw some ideas together, and see what we come up with. I live in RI. I'm going to the conference. My email s Middpowell@.... Focusing on our struggles with Doctors, and family members etc., will really educate people. Let's get the word out. No More Suffering In Silence !!! I was even thinking of names for the book. A few that crossed my mind were "You Really Don't Look To Sick To Me? a a compulation of mitochondrial journeys through the eyes of sufferers, and parents. OR " Mommy why won't they help me" , or "Personal Journey's" A Through Mitochondrial Diseases" I'm really getting excited about this, Robin Mom to Complex 1 OxPhos w/multi-organ invovlment & Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2002 Report Share Posted May 27, 2002 I am really excited about it. I was thinking of asking Dr. Korson, Dr. Shoffner and Dr. Cohen to write something too. Who ever is interested let me know. We'll throw some ideas together, and see what we come up with. I live in RI. I'm going to the conference. My email s Middpowell@.... Focusing on our struggles with Doctors, and family members etc., will really educate people. Let's get the word out. No More Suffering In Silence !!! I was even thinking of names for the book. A few that crossed my mind were "You Really Don't Look To Sick To Me? a a compulation of mitochondrial journeys through the eyes of sufferers, and parents. OR " Mommy why won't they help me" , or "Personal Journey's" A Through Mitochondrial Diseases" I'm really getting excited about this, Robin Mom to Complex 1 OxPhos w/multi-organ invovlment & Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2002 Report Share Posted May 28, 2002 okay Robin... since there are so many people who are excited...how about we have a meeting in our room sometime at conference and we can talk about it further and you can even delegate to those who want to help...such as...guideline, education, stories, poems, travel, support and so on...what do you think? deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2002 Report Share Posted May 28, 2002 okay Robin... since there are so many people who are excited...how about we have a meeting in our room sometime at conference and we can talk about it further and you can even delegate to those who want to help...such as...guideline, education, stories, poems, travel, support and so on...what do you think? deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2002 Report Share Posted May 28, 2002 please let me know if you all are going to meet while in dallas...i'll be at the hotel under " dena royal. " :-) dena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2002 Report Share Posted May 28, 2002 please let me know if you all are going to meet while in dallas...i'll be at the hotel under " dena royal. " :-) dena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2002 Report Share Posted May 28, 2002 Deb, That sounds like a great start to me. See You Soon, Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2002 Report Share Posted May 28, 2002 Deb, That sounds like a great start to me. See You Soon, Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2002 Report Share Posted May 28, 2002 Dena, We will get together at the conference, and start discussions on it. I'm sure going once we get this book, or books depending on how we do this, you will come up with good stories of how you were accused of MSBP for trying to Help you children. See You There Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2002 Report Share Posted May 28, 2002 Some Fantastic titles and ideas!!! Keep it up! Horsley leehorsley@... Re: the book I am really excited about it. I was thinking of asking Dr. Korson, Dr. Shoffner and Dr. Cohen to write something too. Who ever is interested let me know. We'll throw some ideas together, and see what we come up with. I live in RI. I'm going to the conference. My email s Middpowell@....Focusing on our struggles with Doctors, and family members etc., will really educate people. Let's get the word out. No More Suffering In Silence !!! I was even thinking of names for the book. A few that crossed my mind were "You Really Don't Look To Sick To Me? a a compulation of mitochondrial journeys through the eyes of sufferers, and parents. OR " Mommy why won't they help me" , or "Personal Journey's" A Through Mitochondrial Diseases"I'm really getting excited about this,Robin Mom to Complex 1 OxPhos w/multi-organ invovlment & SaraPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2002 Report Share Posted May 28, 2002 Ok you guys meet at the conference but dont forget us out here who could not get there. Keep us informed and a part. This is gonna be really good!!!!! Dont forget to bring back lots of info. to share with us who could not go too! Have fun....okay but not to much fun without me, ok? learn lots and come back ready to share! Best to all! Horsley leehorsley@... Re: the book okay Robin...since there are so many people who are excited...how about we have a meeting in our room sometime at conference and we can talk about it further and you can even delegate to those who want to help...such as...guideline, education, stories, poems, travel, support and so on...what do you think?debPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2002 Report Share Posted May 28, 2002 . I promise to keep records of everything, and notify all in group. Thank God for computers !!!! I'll be in touch, Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2002 Report Share Posted May 28, 2002 You have some great ideas. Maybe we could do two or three books. Poems, stories in one, other info in another and so and so on. Everyone get out your pens or pencils,( I do a lot of erasing when I write, Because I think of something better.) I have been writing poetry for years. I have friends that have me write things for them. We say as told by name. Written by . So if you can't write poetry maybe someone you know could write it for you. Write down names, and anything involving your child, the hardships, the joys, the frustrations, the people that have been horrible and the people who have been godsend. I guess everyone gets the picture, so I will shut up! Looking forward to it. See ya mom to Colby 12, COX IV, LCHAD, ADHD, Chad 14 healthy, Caleb 9 also healthy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2002 Report Share Posted May 28, 2002 Robin The title you don't look sick to me would not pertain to all mito kids. Colby has dysmorphic features, many midline defects, and is his growth is stunted. How about will they grow out of it? I am only kidding. Just something people use to ask me when he was little. See ya mom to Colby 12, COX IV, LCHAD, ADHD, Chad 14 healthy, Caleb 9 also healthy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2002 Report Share Posted May 28, 2002 .. How about will they grow out of it? I am only kidding. Just something people use to ask me when he was little I have heard this one with now and with our baby Bliss, who has CP and a hearing impairment...funny...the bottom line is people who don't know what to say, should just shut thier mouths... deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2002 Report Share Posted May 28, 2002 , I think that's agreat idea. Doing one book for the "people who don't get it " is what I want to do. With individual stories/poems about are hard times, having to watch our children suffer both medically and because of ignorance socially as well. Each submission could have it's own author. Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2002 Report Share Posted May 28, 2002 , My exhusband was teasing and said why don't you call it "What do You Mean You Can't Vaccumm Anymore?". But as for the nightmares that I have been through, my son always looked like the healthy one, and for years had Dr.s ridiculed him and say do your legs only hurt when your with your mother? etc. But there are plenty of other names we could think of . Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2002 Report Share Posted May 28, 2002 , My exhusband was teasing and said why don't you call it "What do You Mean You Can't Vaccumm Anymore?". But as for the nightmares that I have been through, my son always looked like the healthy one, and for years had Dr.s ridiculed him and say do your legs only hurt when your with your mother? etc. But there are plenty of other names we could think of . Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2002 Report Share Posted May 28, 2002 , By the way, "Won't they grow out of it" is just one more reaason to educate the uneducated. Don't you just hate that. Especially when it comes from someone you consider an ally. My mother-in-law used to say "Robin, just let him be, stop going to the Doctors, Your just making him feel sick. AUGH..... We really need to write this book. Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2002 Report Share Posted May 28, 2002 I am sorry I geuss I didn't make myself clear. I think the stories and poems should just be from MITO families but, I think that we could sell the book to many, many families because they could relate to what MITO families are going through. Sorry if I wasn't clear!!! I think the book is a great idea!!!!! Sharon mom to Isabelle and Rebekah > Sharon, > I understand your point,but if we want to use the book as a fundraiser for > UMDF, I just thought stories about Mito disease would be more acceptable. > However, if anyone out there would like to send in stories/poems/etc. about > other diseases and hardships I would be willing to make a collecton of those > and try create a book of those as well. I would be happy to do that. > But if your child has suspected mito I feel that th ose stories'poems etc > could be included in the UMDF Fundraising book. > If others want to comment on this please let me know. And then we will have > to decide what organization the profits will go to. I am all for publishing > any story. > Robin Quote Link to comment Share on other sites More sharing options...
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