Guest guest Posted December 9, 2003 Report Share Posted December 9, 2003 Darla, Are Sunshine Foundation wish took almost 2 years on a waiting list. If things would have changed suddenly we could have been moved up on the list. Lucas is nonverbal and loves action and movement therefore we chose DisneyWorld over any other wish. HTH, Loriann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2003 Report Share Posted December 9, 2003 Darla, Are Sunshine Foundation wish took almost 2 years on a waiting list. If things would have changed suddenly we could have been moved up on the list. Lucas is nonverbal and loves action and movement therefore we chose DisneyWorld over any other wish. HTH, Loriann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2003 Report Share Posted December 9, 2003 How do you know when you should try to make your child's wish come true? I would love to have Asenath do something exciting and something to do with dinosaurs probably (Land Before Time Dinosaurs are her absolute favorite toys in the world!!!) but am unsure as to when to pursue it. I know she has an issue that could kill her at any time and yet she may have many more years. She is so young and I think she would probably appreciate it more when she is older but yet what if there aren't future years? What do you all think? Also, who do you talk to about the issue to make it happen? Is it a long process with lots of qualification/paper work? Etc. Etc. Darla: mommy to AsenathGet more from the Web. FREE MSN Explorer download : http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2003 Report Share Posted December 9, 2003 Children under the age eighteen with a life- theatening medical condition (i.e., progressive, degenerative, or malignant medical condiotn that has placed the child's life in jeopardy) are potentially eligible for a wish. The Foundation's mission reflects the life-changing impact children,families,referral sources,donnors,sponsors, and the entire community. To learn more about Make-A-Wish Foundation visit www.wish.org Darla Klein wrote: How do you know when you should try to make your child's wish come true? I would love to have Asenath do something exciting and something to do with dinosaurs probably (Land Before Time Dinosaurs are her absolute favorite toys in the world!!!) but am unsure as to when to pursue it. I know she has an issue that could kill her at any time and yet she may have many more years. She is so young and I think she would probably appreciate it more when she is older but yet what if there aren't future years? What do you all think? Also, who do you talk to about the issue to make it happen? Is it a long process with lots of qualification/paper work? Etc. Etc. Darla: mommy to AsenathPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2003 Report Share Posted December 9, 2003 Children under the age eighteen with a life- theatening medical condition (i.e., progressive, degenerative, or malignant medical condiotn that has placed the child's life in jeopardy) are potentially eligible for a wish. The Foundation's mission reflects the life-changing impact children,families,referral sources,donnors,sponsors, and the entire community. To learn more about Make-A-Wish Foundation visit www.wish.org Darla Klein wrote: How do you know when you should try to make your child's wish come true? I would love to have Asenath do something exciting and something to do with dinosaurs probably (Land Before Time Dinosaurs are her absolute favorite toys in the world!!!) but am unsure as to when to pursue it. I know she has an issue that could kill her at any time and yet she may have many more years. She is so young and I think she would probably appreciate it more when she is older but yet what if there aren't future years? What do you all think? Also, who do you talk to about the issue to make it happen? Is it a long process with lots of qualification/paper work? Etc. Etc. Darla: mommy to AsenathPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2003 Report Share Posted December 9, 2003 Children under the age eighteen with a life- theatening medical condition (i.e., progressive, degenerative, or malignant medical condiotn that has placed the child's life in jeopardy) are potentially eligible for a wish. The Foundation's mission reflects the life-changing impact children,families,referral sources,donnors,sponsors, and the entire community. To learn more about Make-A-Wish Foundation visit www.wish.org Darla Klein wrote: How do you know when you should try to make your child's wish come true? I would love to have Asenath do something exciting and something to do with dinosaurs probably (Land Before Time Dinosaurs are her absolute favorite toys in the world!!!) but am unsure as to when to pursue it. I know she has an issue that could kill her at any time and yet she may have many more years. She is so young and I think she would probably appreciate it more when she is older but yet what if there aren't future years? What do you all think? Also, who do you talk to about the issue to make it happen? Is it a long process with lots of qualification/paper work? Etc. Etc. Darla: mommy to AsenathPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2003 Report Share Posted December 9, 2003 Hi Darla, just as Dawn was saying we too went on a Wish trip for Matt to Disney, when he was 3 yrs. old (Doctors didnt think he would be around long)he was very ill at the time. We can now proudly say he is stumping all the docs as he is now 7 years old and doing much better. I'm glad the doctor had us go right away, we had so much fun. And although Matt really doesnt remember much, we his family will always remember the smile on his face for that week and the joy that it brought him and us as a family at the time. THere wasnt much smiling going on back then, just worry, worry, worry. If you do sign up for a Make a Wish and you choose Disney Florida, there is a place called Give the Kids the World Village that we stayed at as part of the trip package, and this place is awesome. It is a village for critical and chronically ill children. The condos are beautiful and spacious, they have swimming pools, a huge lake with a cute pirate ship that the kids can play or fish off of and a fishing dock, polls and bate is free, the disney charaters come to visit, and a small water park, merry go round, train rides, and much more, breakfast, lunch and dinner is free everyday (provided by Perkins Pancake house), the food establishment is a gingerbread house, there is a castle with arcades and games, there is even a snack bar for hotdogs, chilly, icecream, popcorn ect and it is in the shape of a banana split, some trees are sculptures of friendly faces, you have to see this place to believe it and every night the mayor of Give the Kids the World Village (who is dressed in a Rabbit suit) will tuck your child in bed. They also provide free passes into the parks, Universal, mgm studios, Islands of Adventure, Magic Kingdom and much more, you name the places they get you the passes with free parking. I can just go on and on about this place which also has doctors and nurses on staff and on Wednesday nights you can have a babysitter because it is mom and dads night out alone, if you can image or remember what thats like!!!! Make a Wish also gave us a rent a car for the week. And for the children there is no waiting in lines, Matt was given a Make a Wish shirt and The Village gave him a huge button to wear and that signals the staff at all the Disney Parks to give extra attention to you and your family. They were all so nice in Florida. Also the village gives your child a star you put their name on the star and they stick on the ceiling on the castle they have at the village. Imagine over a Hundreds of stars on a ceiling of all the children who stay there, and when your child does pass on doesnt matter if they live to be 100 yrs old they will send you your childs star for you to treasure, and they also print a newsletter monthly and they give special mention to all the " Fallen Stars " for that month. Which is so touching i cry every time i think of it. You can request staying at the village when you talk to Make a Wish. I highly recommend staying there!!! We are always welcome to go back to the village to visit and we have, and they will have a staff member climb a ladder to show you your child star everytime you visit. We plan on going back to Disney with Matt in 2005, he will be old enough to remember his next trip and yet it will still be a very magical place for him, and because of Make a Wish it will always be magical for us his family every time we go. Hope you get your wish for Aseneth soon you all deserve what ever she wishes for!! Barb, aka matts_mom96, aka Robsgirl Ps Give the Kids the World Village does have a website. If you like i can send you the link!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2003 Report Share Posted December 9, 2003 Hi Barb, I was wondering about the make a wish too. I was told that your child has to be 2.5 yrs. of age and that they actually have to speak the wish themselves. My daughter does not speak yet...and she was 2 in September of this year. Just curious how that worked for you guys? I am glad to hear that it was a wonderful experience for you and yours. Would also love to have the website for Give the Kids the World Village. Thanks in advance for any info. You may privately e-mail me at: djvanaman@... Hope to hear from you soon. Debbie Vanaman Re: Make -a-Wish question Hi Darla, just as Dawn was saying we too went on a Wish trip for Matt to Disney, when he was 3 yrs. old (Doctors didnt think he would be around long)he was very ill at the time. We can now proudly say he is stumping all the docs as he is now 7 years old and doing much better. I'm glad the doctor had us go right away, we had so much fun. And although Matt really doesnt remember much, we his family will always remember the smile on his face for that week and the joy that it brought him and us as a family at the time. THere wasnt much smiling going on back then, just worry, worry, worry. If you do sign up for a Make a Wish and you choose Disney Florida, there is a place called Give the Kids the World Village that we stayed at as part of the trip package, and this place is awesome. It is a village for critical and chronically ill children. The condos are beautiful and spacious, they have swimming pools, a huge lake with a cute pirate ship that the kids can play or fish off of and a fishing dock, polls and bate is free, the disney charaters come to visit, and a small water park, merry go round, train rides, and much more, breakfast, lunch and dinner is free everyday (provided by Perkins Pancake house), the food establishment is a gingerbread house, there is a castle with arcades and games, there is even a snack bar for hotdogs, chilly, icecream, popcorn ect and it is in the shape of a banana split, some trees are sculptures of friendly faces, you have to see this place to believe it and every night the mayor of Give the Kids the World Village (who is dressed in a Rabbit suit) will tuck your child in bed. They also provide free passes into the parks, Universal, mgm studios, Islands of Adventure, Magic Kingdom and much more, you name the places they get you the passes with free parking. I can just go on and on about this place which also has doctors and nurses on staff and on Wednesday nights you can have a babysitter because it is mom and dads night out alone, if you can image or remember what thats like!!!! Make a Wish also gave us a rent a car for the week. And for the children there is no waiting in lines, Matt was given a Make a Wish shirt and The Village gave him a huge button to wear and that signals the staff at all the Disney Parks to give extra attention to you and your family. They were all so nice in Florida. Also the village gives your child a star you put their name on the star and they stick on the ceiling on the castle they have at the village. Imagine over a Hundreds of stars on a ceiling of all the children who stay there, and when your child does pass on doesnt matter if they live to be 100 yrs old they will send you your childs star for you to treasure, and they also print a newsletter monthly and they give special mention to all the "Fallen Stars" for that month. Which is so touching i cry every time i think of it. You can request staying at the village when you talk to Make a Wish. I highly recommend staying there!!! We are always welcome to go back to the village to visit and we have, and they will have a staff member climb a ladder to show you your child star everytime you visit. We plan on going back to Disney with Matt in 2005, he will be old enough to remember his next trip and yet it will still be a very magical place for him, and because of Make a Wish it will always be magical for us his family every time we go. Hope you get your wish for Aseneth soon you all deserve what ever she wishes for!! Barb, aka matts_mom96, aka Robsgirl Ps Give the Kids the World Village does have a website. If you like i can send you the link!!Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2003 Report Share Posted December 9, 2003 We were told that would probably not live past the age of 3. Her doctors kept encouraging us to call MAW. I just couldn't bring myself to admit that we might lose her soon so I never called. Finally I called in 2000. She was 7. That was one of the best calls I ever made. Our trip was amazing! Give Kids the World was the best. Since then we have been to Disney World several times but it will never be the same because we will never get to stay there again. Unless Michala's wish is granted next year. Here is our website in case anyone would like to see 's paver that our friends purchased for her at Give Kids The World. http://pages.ivillage.com/mommie2angels/ If any of you are going to Give Kids The World soon you can see her paver right outside the back door of the main building. Kelli Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2003 Report Share Posted December 9, 2003 We were told that would probably not live past the age of 3. Her doctors kept encouraging us to call MAW. I just couldn't bring myself to admit that we might lose her soon so I never called. Finally I called in 2000. She was 7. That was one of the best calls I ever made. Our trip was amazing! Give Kids the World was the best. Since then we have been to Disney World several times but it will never be the same because we will never get to stay there again. Unless Michala's wish is granted next year. Here is our website in case anyone would like to see 's paver that our friends purchased for her at Give Kids The World. http://pages.ivillage.com/mommie2angels/ If any of you are going to Give Kids The World soon you can see her paver right outside the back door of the main building. Kelli Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2003 Report Share Posted December 9, 2003 We were told that would probably not live past the age of 3. Her doctors kept encouraging us to call MAW. I just couldn't bring myself to admit that we might lose her soon so I never called. Finally I called in 2000. She was 7. That was one of the best calls I ever made. Our trip was amazing! Give Kids the World was the best. Since then we have been to Disney World several times but it will never be the same because we will never get to stay there again. Unless Michala's wish is granted next year. Here is our website in case anyone would like to see 's paver that our friends purchased for her at Give Kids The World. http://pages.ivillage.com/mommie2angels/ If any of you are going to Give Kids The World soon you can see her paver right outside the back door of the main building. Kelli Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2003 Report Share Posted December 9, 2003 Kelli, You are still online too...we really must be related..hahahaha. Did you ever get the chance to ask your husband about that? Just curious. Talk soon, Debbie Re: Re: Make -a-Wish question We were told that would probably not live past the age of 3. Her doctors kept encouraging us to call MAW. I just couldn't bring myself to admit that we might lose her soon so I never called. Finally I called in 2000. She was 7. That was one of the best calls I ever made. Our trip was amazing! Give Kids the World was the best. Since then we have been to Disney World several times but it will never be the same because we will never get to stay there again. Unless Michala's wish is granted next year. Here is our website in case anyone would like to see 's paver that our friends purchased for her at Give Kids The World. http://pages.ivillage.com/mommie2angels/ If any of you are going to Give Kids The World soon you can see her paver right outside the back door of the main building. Kelli Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2003 Report Share Posted December 9, 2003 Kelli, You are still online too...we really must be related..hahahaha. Did you ever get the chance to ask your husband about that? Just curious. Talk soon, Debbie Re: Re: Make -a-Wish question We were told that would probably not live past the age of 3. Her doctors kept encouraging us to call MAW. I just couldn't bring myself to admit that we might lose her soon so I never called. Finally I called in 2000. She was 7. That was one of the best calls I ever made. Our trip was amazing! Give Kids the World was the best. Since then we have been to Disney World several times but it will never be the same because we will never get to stay there again. Unless Michala's wish is granted next year. Here is our website in case anyone would like to see 's paver that our friends purchased for her at Give Kids The World. http://pages.ivillage.com/mommie2angels/ If any of you are going to Give Kids The World soon you can see her paver right outside the back door of the main building. Kelli Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2003 Report Share Posted December 9, 2003 Kelli, You are still online too...we really must be related..hahahaha. Did you ever get the chance to ask your husband about that? Just curious. Talk soon, Debbie Re: Re: Make -a-Wish question We were told that would probably not live past the age of 3. Her doctors kept encouraging us to call MAW. I just couldn't bring myself to admit that we might lose her soon so I never called. Finally I called in 2000. She was 7. That was one of the best calls I ever made. Our trip was amazing! Give Kids the World was the best. Since then we have been to Disney World several times but it will never be the same because we will never get to stay there again. Unless Michala's wish is granted next year. Here is our website in case anyone would like to see 's paver that our friends purchased for her at Give Kids The World. http://pages.ivillage.com/mommie2angels/ If any of you are going to Give Kids The World soon you can see her paver right outside the back door of the main building. Kelli Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2003 Report Share Posted December 9, 2003 Hey Debbie, you know I just thought about that when I saw your email. I forgot to ask him. Will make a note to ask him. He gets the early shift and gets to go to sleep with Michala. Our weird sleep habits around here. LOL!!! When settles down and I can turn her apnea heart monitor on I go to sleep. Mike gets up with Michala when she has her first seizure which is usually between 2:00-3:00 am. Depending on what type of seizure it is she may or may not go back to sleep. When he gets up between 4:30-5 depending on how their night was he wakes me up to either get up with her or go get in the bed with her. Since her seizures are so bad right now she can't sleep by herself. We both listen out for 's monitor. She has anywhere from 4-14 apnea episodes a night. Central and obstructive. So there is no telling what time you may see me online. I have to do something to keep me busy so I don't fall asleep before turning 's monitor on. Just like I am doing now I tend to ramble on and on when it's real late. Sorry about that!!! So what are you doing up so late? Is this typical for you? Have a great night! Kelli Re: Re: Make -a-Wish question We were told that would probably not live past the age of 3. Her doctors kept encouraging us to call MAW. I just couldn't bring myself to admit that we might lose her soon so I never called. Finally I called in 2000. She was 7. That was one of the best calls I ever made. Our trip was amazing! Give Kids the World was the best. Since then we have been to Disney World several times but it will never be the same because we will never get to stay there again. Unless Michala's wish is granted next year. Here is our website in case anyone would like to see 's paver that our friends purchased for her at Give Kids The World. http://pages.ivillage.com/mommie2angels/ If any of you are going to Give Kids The World soon you can see her paver right outside the back door of the main building. Kelli Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2003 Report Share Posted December 9, 2003 Hey Debbie, you know I just thought about that when I saw your email. I forgot to ask him. Will make a note to ask him. He gets the early shift and gets to go to sleep with Michala. Our weird sleep habits around here. LOL!!! When settles down and I can turn her apnea heart monitor on I go to sleep. Mike gets up with Michala when she has her first seizure which is usually between 2:00-3:00 am. Depending on what type of seizure it is she may or may not go back to sleep. When he gets up between 4:30-5 depending on how their night was he wakes me up to either get up with her or go get in the bed with her. Since her seizures are so bad right now she can't sleep by herself. We both listen out for 's monitor. She has anywhere from 4-14 apnea episodes a night. Central and obstructive. So there is no telling what time you may see me online. I have to do something to keep me busy so I don't fall asleep before turning 's monitor on. Just like I am doing now I tend to ramble on and on when it's real late. Sorry about that!!! So what are you doing up so late? Is this typical for you? Have a great night! Kelli Re: Re: Make -a-Wish question We were told that would probably not live past the age of 3. Her doctors kept encouraging us to call MAW. I just couldn't bring myself to admit that we might lose her soon so I never called. Finally I called in 2000. She was 7. That was one of the best calls I ever made. Our trip was amazing! Give Kids the World was the best. Since then we have been to Disney World several times but it will never be the same because we will never get to stay there again. Unless Michala's wish is granted next year. Here is our website in case anyone would like to see 's paver that our friends purchased for her at Give Kids The World. http://pages.ivillage.com/mommie2angels/ If any of you are going to Give Kids The World soon you can see her paver right outside the back door of the main building. Kelli Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2003 Report Share Posted December 9, 2003 Hey Debbie, you know I just thought about that when I saw your email. I forgot to ask him. Will make a note to ask him. He gets the early shift and gets to go to sleep with Michala. Our weird sleep habits around here. LOL!!! When settles down and I can turn her apnea heart monitor on I go to sleep. Mike gets up with Michala when she has her first seizure which is usually between 2:00-3:00 am. Depending on what type of seizure it is she may or may not go back to sleep. When he gets up between 4:30-5 depending on how their night was he wakes me up to either get up with her or go get in the bed with her. Since her seizures are so bad right now she can't sleep by herself. We both listen out for 's monitor. She has anywhere from 4-14 apnea episodes a night. Central and obstructive. So there is no telling what time you may see me online. I have to do something to keep me busy so I don't fall asleep before turning 's monitor on. Just like I am doing now I tend to ramble on and on when it's real late. Sorry about that!!! So what are you doing up so late? Is this typical for you? Have a great night! Kelli Re: Re: Make -a-Wish question We were told that would probably not live past the age of 3. Her doctors kept encouraging us to call MAW. I just couldn't bring myself to admit that we might lose her soon so I never called. Finally I called in 2000. She was 7. That was one of the best calls I ever made. Our trip was amazing! Give Kids the World was the best. Since then we have been to Disney World several times but it will never be the same because we will never get to stay there again. Unless Michala's wish is granted next year. Here is our website in case anyone would like to see 's paver that our friends purchased for her at Give Kids The World. http://pages.ivillage.com/mommie2angels/ If any of you are going to Give Kids The World soon you can see her paver right outside the back door of the main building. Kelli Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2003 Report Share Posted December 9, 2003 Hi Kelli, I just visited your family's website. Truly amazing...you have done such a beautiful job with it!! Your girls are so beautiful!!! My, you really have been through a lot...I am only just beginning. Jaleigh has just learned to sit up by herself & how to hold her own bottle. She is immobile and we just recently got her wheelchair & stander. She says dada...we hope that she will someday speak...but it is hard telling with this disease...such a mystery. I read that your youngest daughter is learning how to sign( I thought that she was the youngest, forgive me if I am wrong). Do your girls speak? If you don't mind my asking? My husband says it is just a coincidence that we share the Hopkins name...but he is not the Hopkins, I am...LOL!!! Probably not related but it was neat to see someone else with that last name. What exactly is your girls' diagnosis's? I am sorry to have forgotten...but it is late. Yes, I am very often up until at least this hour. My husband, , works 2nd shift, as well as 1st. He goes into work at about 7:30am and gets off at 10:30pm. It takes him an hour to get home and most nights he ends up working late. So, here I sit talking to people and making new friends. Thanks for writing & getting to know us. I need more people to talk to personally...who have kind of been there and done that. I am so new to all of this that it scares me to death sometimes what I read on these e-mails. I would love to get to know you & yours better. Please keep in touch and you take care. Have a great night as well. Hope to talk to you soon, Debbie Re: Re: Make -a-Wish question We were told that would probably not live past the age of 3. Her doctors kept encouraging us to call MAW. I just couldn't bring myself to admit that we might lose her soon so I never called. Finally I called in 2000. She was 7. That was one of the best calls I ever made. Our trip was amazing! Give Kids the World was the best. Since then we have been to Disney World several times but it will never be the same because we will never get to stay there again. Unless Michala's wish is granted next year. Here is our website in case anyone would like to see 's paver that our friends purchased for her at Give Kids The World. http://pages.ivillage.com/mommie2angels/ If any of you are going to Give Kids The World soon you can see her paver right outside the back door of the main building. Kelli Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2003 Report Share Posted December 9, 2003 Hi Kelli, I just visited your family's website. Truly amazing...you have done such a beautiful job with it!! Your girls are so beautiful!!! My, you really have been through a lot...I am only just beginning. Jaleigh has just learned to sit up by herself & how to hold her own bottle. She is immobile and we just recently got her wheelchair & stander. She says dada...we hope that she will someday speak...but it is hard telling with this disease...such a mystery. I read that your youngest daughter is learning how to sign( I thought that she was the youngest, forgive me if I am wrong). Do your girls speak? If you don't mind my asking? My husband says it is just a coincidence that we share the Hopkins name...but he is not the Hopkins, I am...LOL!!! Probably not related but it was neat to see someone else with that last name. What exactly is your girls' diagnosis's? I am sorry to have forgotten...but it is late. Yes, I am very often up until at least this hour. My husband, , works 2nd shift, as well as 1st. He goes into work at about 7:30am and gets off at 10:30pm. It takes him an hour to get home and most nights he ends up working late. So, here I sit talking to people and making new friends. Thanks for writing & getting to know us. I need more people to talk to personally...who have kind of been there and done that. I am so new to all of this that it scares me to death sometimes what I read on these e-mails. I would love to get to know you & yours better. Please keep in touch and you take care. Have a great night as well. Hope to talk to you soon, Debbie Re: Re: Make -a-Wish question We were told that would probably not live past the age of 3. Her doctors kept encouraging us to call MAW. I just couldn't bring myself to admit that we might lose her soon so I never called. Finally I called in 2000. She was 7. That was one of the best calls I ever made. Our trip was amazing! Give Kids the World was the best. Since then we have been to Disney World several times but it will never be the same because we will never get to stay there again. Unless Michala's wish is granted next year. Here is our website in case anyone would like to see 's paver that our friends purchased for her at Give Kids The World. http://pages.ivillage.com/mommie2angels/ If any of you are going to Give Kids The World soon you can see her paver right outside the back door of the main building. Kelli Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2003 Report Share Posted December 9, 2003 Hi Kelli, I just visited your family's website. Truly amazing...you have done such a beautiful job with it!! Your girls are so beautiful!!! My, you really have been through a lot...I am only just beginning. Jaleigh has just learned to sit up by herself & how to hold her own bottle. She is immobile and we just recently got her wheelchair & stander. She says dada...we hope that she will someday speak...but it is hard telling with this disease...such a mystery. I read that your youngest daughter is learning how to sign( I thought that she was the youngest, forgive me if I am wrong). Do your girls speak? If you don't mind my asking? My husband says it is just a coincidence that we share the Hopkins name...but he is not the Hopkins, I am...LOL!!! Probably not related but it was neat to see someone else with that last name. What exactly is your girls' diagnosis's? I am sorry to have forgotten...but it is late. Yes, I am very often up until at least this hour. My husband, , works 2nd shift, as well as 1st. He goes into work at about 7:30am and gets off at 10:30pm. It takes him an hour to get home and most nights he ends up working late. So, here I sit talking to people and making new friends. Thanks for writing & getting to know us. I need more people to talk to personally...who have kind of been there and done that. I am so new to all of this that it scares me to death sometimes what I read on these e-mails. I would love to get to know you & yours better. Please keep in touch and you take care. Have a great night as well. Hope to talk to you soon, Debbie Re: Re: Make -a-Wish question We were told that would probably not live past the age of 3. Her doctors kept encouraging us to call MAW. I just couldn't bring myself to admit that we might lose her soon so I never called. Finally I called in 2000. She was 7. That was one of the best calls I ever made. Our trip was amazing! Give Kids the World was the best. Since then we have been to Disney World several times but it will never be the same because we will never get to stay there again. Unless Michala's wish is granted next year. Here is our website in case anyone would like to see 's paver that our friends purchased for her at Give Kids The World. http://pages.ivillage.com/mommie2angels/ If any of you are going to Give Kids The World soon you can see her paver right outside the back door of the main building. Kelli Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2003 Report Share Posted December 9, 2003 Our oldest daughter has Mitochondrial Encephalomyopathy. We were told it was a sporadic mutation and the chances of us having another child with a mito disease was very slim. is 10. I often wonder though if I am not the carrier and if that's why I have the aches and pains I do. I always write it off as being tired and doing so much for the girls. Michala is our middle daughter. She is 6. She has Aicardi syndrome. It effects about 300-500 girls worldwide. We are with our 3rd genetics team. After more test than I care to think about all 3 teams have concluded that there is no link between the two diseases and syndromes. We even had a genetist call us one night to tell us that. He said I can't explain it and I cannot accept it so I am dropping your case and referring your family to someone else. I told him that we cannot explain it but we have accepted it and we have to get on with our lives. He said that it's like winning the lottery twice in a lifetime. We haven't even one once! LOL!!! He said that it's not medically possible to have two children with such rare diseases/syndromes and there not be a link between them. Michala was also diagnosed with angiosarcoma, which is a rare form of cancer, when she was a year old. I am not sure how rare it is in adults but it's rare in children. It usually affects adults. Anyway after two surgeries to try to remove the cancer from her foot (you probably saw the picture of her foot on our website) they had to amputate. She was supposed to go through 6 months of chemotherapy but almost died in her 5th month so we had to stop chemo. We thought the Aicardi syndrome with all the seizures would take her life but then she was hit with cancer. We have definitely had our share of miracles. Praise God! One of our most recent miracles was the birth of our healthy now 18 month old. She does sign. We use sign language with our two special needs daughters so our baby picked it up at an early age. Our two oldest daughters have no speech. Even though our baby can talk she still signs which is great for her to be able to communicate with our other two daughters. That is so wonderful that Jaleigh is sitting up, holding her head up and starting to say words. WOW!!! I have always longed for those things for . Michala is able to sit up, hold her head up, and gets around really well with only one leg. See it's late and I am rambling again. I am glad I got to meet you and am looking forward to getting to know you and your family. I am on and off this list serv so often because of hospital and doctors visits. It seems I can't be consistent with much. Talk to you soon! Kelli Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2003 Report Share Posted December 9, 2003 Our oldest daughter has Mitochondrial Encephalomyopathy. We were told it was a sporadic mutation and the chances of us having another child with a mito disease was very slim. is 10. I often wonder though if I am not the carrier and if that's why I have the aches and pains I do. I always write it off as being tired and doing so much for the girls. Michala is our middle daughter. She is 6. She has Aicardi syndrome. It effects about 300-500 girls worldwide. We are with our 3rd genetics team. After more test than I care to think about all 3 teams have concluded that there is no link between the two diseases and syndromes. We even had a genetist call us one night to tell us that. He said I can't explain it and I cannot accept it so I am dropping your case and referring your family to someone else. I told him that we cannot explain it but we have accepted it and we have to get on with our lives. He said that it's like winning the lottery twice in a lifetime. We haven't even one once! LOL!!! He said that it's not medically possible to have two children with such rare diseases/syndromes and there not be a link between them. Michala was also diagnosed with angiosarcoma, which is a rare form of cancer, when she was a year old. I am not sure how rare it is in adults but it's rare in children. It usually affects adults. Anyway after two surgeries to try to remove the cancer from her foot (you probably saw the picture of her foot on our website) they had to amputate. She was supposed to go through 6 months of chemotherapy but almost died in her 5th month so we had to stop chemo. We thought the Aicardi syndrome with all the seizures would take her life but then she was hit with cancer. We have definitely had our share of miracles. Praise God! One of our most recent miracles was the birth of our healthy now 18 month old. She does sign. We use sign language with our two special needs daughters so our baby picked it up at an early age. Our two oldest daughters have no speech. Even though our baby can talk she still signs which is great for her to be able to communicate with our other two daughters. That is so wonderful that Jaleigh is sitting up, holding her head up and starting to say words. WOW!!! I have always longed for those things for . Michala is able to sit up, hold her head up, and gets around really well with only one leg. See it's late and I am rambling again. I am glad I got to meet you and am looking forward to getting to know you and your family. I am on and off this list serv so often because of hospital and doctors visits. It seems I can't be consistent with much. Talk to you soon! Kelli Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2003 Report Share Posted December 9, 2003 Our oldest daughter has Mitochondrial Encephalomyopathy. We were told it was a sporadic mutation and the chances of us having another child with a mito disease was very slim. is 10. I often wonder though if I am not the carrier and if that's why I have the aches and pains I do. I always write it off as being tired and doing so much for the girls. Michala is our middle daughter. She is 6. She has Aicardi syndrome. It effects about 300-500 girls worldwide. We are with our 3rd genetics team. After more test than I care to think about all 3 teams have concluded that there is no link between the two diseases and syndromes. We even had a genetist call us one night to tell us that. He said I can't explain it and I cannot accept it so I am dropping your case and referring your family to someone else. I told him that we cannot explain it but we have accepted it and we have to get on with our lives. He said that it's like winning the lottery twice in a lifetime. We haven't even one once! LOL!!! He said that it's not medically possible to have two children with such rare diseases/syndromes and there not be a link between them. Michala was also diagnosed with angiosarcoma, which is a rare form of cancer, when she was a year old. I am not sure how rare it is in adults but it's rare in children. It usually affects adults. Anyway after two surgeries to try to remove the cancer from her foot (you probably saw the picture of her foot on our website) they had to amputate. She was supposed to go through 6 months of chemotherapy but almost died in her 5th month so we had to stop chemo. We thought the Aicardi syndrome with all the seizures would take her life but then she was hit with cancer. We have definitely had our share of miracles. Praise God! One of our most recent miracles was the birth of our healthy now 18 month old. She does sign. We use sign language with our two special needs daughters so our baby picked it up at an early age. Our two oldest daughters have no speech. Even though our baby can talk she still signs which is great for her to be able to communicate with our other two daughters. That is so wonderful that Jaleigh is sitting up, holding her head up and starting to say words. WOW!!! I have always longed for those things for . Michala is able to sit up, hold her head up, and gets around really well with only one leg. See it's late and I am rambling again. I am glad I got to meet you and am looking forward to getting to know you and your family. I am on and off this list serv so often because of hospital and doctors visits. It seems I can't be consistent with much. Talk to you soon! Kelli Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2003 Report Share Posted December 9, 2003 I'm sorry ya'll! I meant to send that long email directly to Debbie. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2003 Report Share Posted December 9, 2003 I'm sorry ya'll! I meant to send that long email directly to Debbie. Quote Link to comment Share on other sites More sharing options...
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