Guest guest Posted August 7, 2005 Report Share Posted August 7, 2005 , Which foundation did you go through for the " special " wish? I think that is awesome that she qualified!! Our kids deserve the best! I think your choices are wonderful, Disney World and Disney cruise should count as two I would think...When will you be traveling? Tia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2005 Report Share Posted August 7, 2005 what about to come to aus to meet all of us out here id love to meet you > > Hello everyone, > > Just wanted to let you guys know Makenna qualified for the special > wish. We have to request three distinctly different wishes for her > and mail in the paperwork. We have thought of Disney World and a > Disney cruise but I am wondering if these are different enough to > count as two wishes? we are also entertaining the thought of swimming > with the dolphins. Does any one else have a great idea for a dream > WISH for my little CHARGEr? I am open to the possibilities but not > very creative. I would appreciate any thougts on the topic. Thanks > , mom to Makenna (4 1/2) > > > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada > information and membership, please visit http://www.chargesyndrome.ca, or > email info@.... > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org <http://www.chargesyndrome.org> or by calling > 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2005 Report Share Posted August 7, 2005 My wish would be to have the playground surface that is used at public parks, in Dylan's play yard, so he could walk, climb, run, bike whatever without changing surfaces and with great absorption of impact if he falls off the equipment to help minimize risk of retinal detachment. Kim > Hello everyone, > > Just wanted to let you guys know Makenna qualified for the special > wish. We have to request three distinctly different wishes for her > and mail in the paperwork. We have thought of Disney World and a > Disney cruise but I am wondering if these are different enough to > count as two wishes? we are also entertaining the thought of swimming > with the dolphins. Does any one else have a great idea for a dream > WISH for my little CHARGEr? I am open to the possibilities but not > very creative. I would appreciate any thougts on the topic. Thanks > , mom to Makenna (4 1/2) > > > > > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada > information and membership, please visit http://www.chargesyndrome.ca, or > email info@.... > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2005 Report Share Posted August 7, 2005 Hi , Wow that is great !!!! has qualified every year for the make a wish program but since he is terrified of large things such as Mickey Mouse Etc. and has said several time no Thank you..I have decided to wait...however the nurse who recommends every year has suggested we look at the web site.because disney is not the only option... It has many stories of wishes that have been granted.....a Trip to Hawaii, a piano....here's the web site maybe this will help www.wish.org Good Luck Ellen mom to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2005 Report Share Posted August 7, 2005 Tia, I didn't look for the WISH. A lady from our local " make a wish " which is called a special wish contacted us, after seeing Makenna's article in the paper during CHARGE awareness week. If you go to the website you can nominate your child. They describe the qualifications and all. , mom to Makenna (41/2) -- Re: Special Wish , Which foundation did you go through for the " special " wish? I think that is awesome that she qualified!! Our kids deserve the best! I think your choices are wonderful, Disney World and Disney cruise should count as two I would think...When will you be traveling? Tia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2005 Report Share Posted August 7, 2005 I think getting the wishes is awesome, but I don't know how CHARGE qualifies as a life threatening medical condition. I know it can the first couple of years in particular, depending on the severity of heart defects etc, but MAKE-A-WISH is for kids over 2.5 and it seems our kids are generally stable by then. It is certainly life impacting and ongoing surgeries are a risk. Needing ongoing medical care, but not at increased risk of dying???? How did they qualify? Kim > www.wish.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2005 Report Share Posted August 7, 2005 They've changed the criteria for Make-a-Wish a bit. Some MD's were reluctent to Ok their patients 'cause they didn't want the familys to give up. So they made changes... So most of our kids with ongoing medical issues now qualify. Barb > I think getting the wishes is awesome, but I don't know how CHARGE qualifies > as a life threatening medical condition. I know it can the first couple of > years in particular, depending on the severity of heart defects etc, but > MAKE-A-WISH is for kids over 2.5 and it seems our kids are generally stable > by then. It is certainly life impacting and ongoing surgeries are a risk. > Needing ongoing medical care, but not at increased risk of dying???? How > did they qualify? > > Kim > > > > > > www.wish.org > > > > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada > information and membership, please visit http://www.chargesyndrome.ca, or email > info@.... > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2005 Report Share Posted August 7, 2005 i looked into this progam, and sent them an application, it sounds great, but VERY expensive. over $2,000 for 5 days and its only 20-30mns with the dolphin and 30mn in a classroom. i think it came ot about $450/day for 1 hour! they did call me and tell me they have some scholarhsips available, but i called back and they never called me back. i will try and call them again cathie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2005 Report Share Posted August 7, 2005 Makenna's wish is through the Special Wish Foundation. I think it goes to age 21. You can check the website. Can anything think of something we could do that would benefit the CHARGE family through our wish? Makenna is at an age where she can't really grasp the idea of a wish and we would be guessing at what she would enjoy. Jay and I thought it would be nice to benefit the whole foundation. Open to the possibilities. Let us know. Thanks, , Jay and Makenna -- Re: Special Wish Do young adults qualify? I have a very dear friend with a very rare disease that I would love to " make a wish " for. Re: Special Wish They've changed the criteria for Make-a-Wish a bit. Some MD's were reluctent to Ok their patients 'cause they didn't want the familys to give up. So they made changes... So most of our kids with ongoing medical issues now qualify. Barb > I think getting the wishes is awesome, but I don't know how CHARGE qualifies > as a life threatening medical condition. I know it can the first couple of > years in particular, depending on the severity of heart defects etc, but > MAKE-A-WISH is for kids over 2.5 and it seems our kids are generally stable > by then. It is certainly life impacting and ongoing surgeries are a risk. > Needing ongoing medical care, but not at increased risk of dying???? How > did they qualify? > > Kim > > > > > > www.wish.org > > > > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada > information and membership, please visit http://www.chargesyndrome.ca, or email > info@.... > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2005 Report Share Posted August 7, 2005 Do they grant wishes to meet celebrities?? Perhaps a wish to meet Oprah and share the CHARGE cause with her? I can't think of any great wishes. Aubrie's would be to meet Emeril, eat at his restaurant, and be a part of taping a show. And then, maybe Emeril would get on board for CHARGE. What are Makenna's obsessions and loves?? Try to tie a wish to something she loves. Michele W Aubrie's mom 7 yrs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2005 Report Share Posted August 8, 2005 , That's so cool that Makenna was chosen for a Special Wish! Gee, I'd have to think about an idea that would benefit all of the CHARGE family. As suggested, something that would get national exposure for CHARGE would be great--meeting someone like Oprah, or one of the national morning news shows like Today or GMA, etc., might be nice. If you opt for a wish just for Makenna, what does she like? Disney would be fun if she likes all those characters, etc. She seemed to enjoy the zoo that day we met you guys in Columbus. The San Diego Zoo is awesome! Or is there something you've always wanted for her at home--like some kind of adaptive toy, equipment, home modification, etc.--that your insurance or waiver won't pay for? I'll keep trying to think of other, broader things for CHARGE. Keep us posted on what you decide. When's your deadline for submitting the wish? --------------------------------- Start your day with Yahoo! - make it your home page Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2005 Report Share Posted August 8, 2005 Makenna's obsessions and loves are TV, anything Disney Channel or Noggin. She loves photographs of herself especially. She likes her friends and cousins. She loves school. Chocolate pudding and yogurt are two loves. She loves the ocean too. I know she would enjoy Disney or anything that has to do with the water or ocean. That is why I think she would like the swimming with the dolphins. I would like this not only to be beneficial for her but something Jay and I are unable to give her. We could manage Disney sometime in her life and we take her to the ocean most years. It would give us a lot of enjoyment to see this lead to better all CHARGErs lives Especially, since it came about due to awareness week. Keep thinking out loud guys. Oprah seems to be common thread. I would be terrified to be the spokesperson for CHARGE on national television though. I am not an expert! (mom to Makenna) -- Re: Special Wish Do they grant wishes to meet celebrities?? Perhaps a wish to meet Oprah and share the CHARGE cause with her? I can't think of any great wishes. Aubrie's would be to meet Emeril, eat at his restaurant, and be a part of taping a show. And then, maybe Emeril would get on board for CHARGE. What are Makenna's obsessions and loves?? Try to tie a wish to something she loves. Michele W Aubrie's mom 7 yrs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2005 Report Share Posted August 8, 2005 - Oprah and the morning shows are all good ideas. I wonder about a show that Makenna likes tho -- anyone she knows? Aubrie watches the Today Show with me and knows Oprah and Dr Phil from seeing me watch them so she would be excited to meet those people -- besides all of the Food Network stars with whom she has her own relationships! It seems to me that you should think along the lines of someone she would recognize and value if you decide to go that route. My guess is that the Foundation will select from your 3 choices the wish that is most " hers " and the one that they are best able to fulfill. This is tough! Michele W Aubrie's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2005 Report Share Posted August 8, 2005 can you do over seas trips come here for a holiday to our deaf blind conf or what ever i dont care lol just come to sydney thats in perth lol im in sydeny come here and meet us and come to the beach yummmmmmmmmmmmm ellen > > - > Oprah and the morning shows are all good ideas. I wonder about a show that > Makenna likes tho -- anyone she knows? Aubrie watches the Today Show with > me and knows Oprah and Dr Phil from seeing me watch them so she would be > excited to meet those people -- besides all of the Food Network stars with > whom she has her own relationships! It seems to me that you should think > along the lines of someone she would recognize and value if you decide to > go > that route. My guess is that the Foundation will select from your 3 > choices > the wish that is most " hers " and the one that they are best able to > fulfill. > This is tough! > > Michele W > Aubrie's mom > > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada > information and membership, please visit http://www.chargesyndrome.ca, or > email info@.... > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org <http://www.chargesyndrome.org> or by calling > 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2005 Report Share Posted August 8, 2005 Another thing to remember about wishes- Not everyone that the kids would be interested in meeting are able/willing to participate. So just because they want it doesn't automatically mean it will happen. Just a little reality. -I love that Aubrie loves the Food Network. Nate loves Animal Planet-he goes through phases with TV. For awhile he was hooked on the Brady Bunch... Barb-mom,Nate(CHARGE)11,Rosie15 > - > Oprah and the morning shows are all good ideas. I wonder about a show that > Makenna likes tho -- anyone she knows? Aubrie watches the Today Show with > me and knows Oprah and Dr Phil from seeing me watch them so she would be > excited to meet those people -- besides all of the Food Network stars with > whom she has her own relationships! It seems to me that you should think > along the lines of someone she would recognize and value if you decide to go > that route. My guess is that the Foundation will select from your 3 choices > the wish that is most " hers " and the one that they are best able to fulfill. > This is tough! > > Michele W > Aubrie's mom > > > > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada > information and membership, please visit http://www.chargesyndrome.ca, or email > info@.... > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2005 Report Share Posted August 9, 2005 Michele, Thanks for your input. You are right this is tough. We are now questioning rather this is the right way to go for increased awareness because we don't want to take her wish from her. She doesn't really like to watch real people on TV so she isn't going to be interested in that kind of wish. We keep going back and forth. Part of me feels like she needs to get the enjoyment out of her wish and part of me feels like in the long run it would be better for her to get the benefits from more exposure to the public. Decisions, Decisions, Decisions. Like I don't make enough already - ugh! I will let you know what we decide. Thanks again, , Makenna's mommy -- Re: Special Wish - Oprah and the morning shows are all good ideas. I wonder about a show that Makenna likes tho -- anyone she knows? Aubrie watches the Today Show with me and knows Oprah and Dr Phil from seeing me watch them so she would be excited to meet those people -- besides all of the Food Network stars with whom she has her own relationships! It seems to me that you should think along the lines of someone she would recognize and value if you decide to go that route. My guess is that the Foundation will select from your 3 choices the wish that is most " hers " and the one that they are best able to fulfill. This is tough! Michele W Aubrie's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2006 Report Share Posted February 7, 2006 Do young adults qualify? I have a very dear friend with a very rare disease that I would love to " make a wish " for. Re: Special Wish They've changed the criteria for Make-a-Wish a bit. Some MD's were reluctent to Ok their patients 'cause they didn't want the familys to give up. So they made changes... So most of our kids with ongoing medical issues now qualify. Barb > I think getting the wishes is awesome, but I don't know how CHARGE qualifies > as a life threatening medical condition. I know it can the first couple of > years in particular, depending on the severity of heart defects etc, but > MAKE-A-WISH is for kids over 2.5 and it seems our kids are generally stable > by then. It is certainly life impacting and ongoing surgeries are a risk. > Needing ongoing medical care, but not at increased risk of dying???? How > did they qualify? > > Kim > > > > > > www.wish.org > > > > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada > information and membership, please visit http://www.chargesyndrome.ca, or email > info@.... > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2006 Report Share Posted February 7, 2006 Thats too bad. My friend is 26. I would have loved to do a wish for her for a vacation or something. She deserves it. Re: Special Wish They've changed the criteria for Make-a-Wish a bit. Some MD's were reluctent to Ok their patients 'cause they didn't want the familys to give up. So they made changes... So most of our kids with ongoing medical issues now qualify. Barb > I think getting the wishes is awesome, but I don't know how CHARGE qualifies > as a life threatening medical condition. I know it can the first couple of > years in particular, depending on the severity of heart defects etc, but > MAKE-A-WISH is for kids over 2.5 and it seems our kids are generally stable > by then. It is certainly life impacting and ongoing surgeries are a risk. > Needing ongoing medical care, but not at increased risk of dying???? How > did they qualify? > > Kim > > > > > > www.wish.org > > > > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada > information and membership, please visit http://www.chargesyndrome.ca, or email > info@.... > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
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