Guest guest Posted April 23, 2004 Report Share Posted April 23, 2004 I noticed already emailed you about the HED foundation (now called the Moody Foundation), but I needed to encorage you to contact them. I posted a similar question about a week ago, and gave me the same website as you. Well I emailed them and the same day got back a responce that they are going to make my daughter a cooling vest. All you need is measurments (they will email you with the info) and a note from your doctor talking about how it will help you child. As soon as they recieve all your information, they put your child on a waiting list. When your child's name is up, they get there vest. I am also currently looking into some fundraising ideas to help Gracie get her's quicker, but am very willing to continue to help this foundation. They really do go out of there way to help kids. Best wishes. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2004 Report Share Posted April 23, 2004 I noticed already emailed you about the HED foundation (now called the Moody Foundation), but I needed to encorage you to contact them. I posted a similar question about a week ago, and gave me the same website as you. Well I emailed them and the same day got back a responce that they are going to make my daughter a cooling vest. All you need is measurments (they will email you with the info) and a note from your doctor talking about how it will help you child. As soon as they recieve all your information, they put your child on a waiting list. When your child's name is up, they get there vest. I am also currently looking into some fundraising ideas to help Gracie get her's quicker, but am very willing to continue to help this foundation. They really do go out of there way to help kids. Best wishes. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2004 Report Share Posted April 23, 2004 I can't thank you enough for sending me this site. I have emailed them asking for exactly how to get a sponser for her. My father already knows of a few people who may be willing to help (he is involved with the Shriners and the Masonic Temple). Also, from what I understand they can get new ones after they grow out of there old ones? I am just so excited how willing they are to help. I sent all of her measurments and doctors note yesterday, so we will see how long it takes. Her pediatrician had never heard of cooling vests before, so she was very willing to help. I really hope we can raise enough money so she can get it before summer starts. How long did it take you? Thank you again, you have been a blessing. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2004 Report Share Posted April 23, 2004 You can try on the HED foundation website HEDFOUDNATION.ORG They have al kinds of info on heating issues and also lists leighs disease as one of the culprits. We knwo that more of the mito's cause heat exhaustion but they are very helpful there. You shuold also look into getting a Kool vest fromthem. It is a life saver. I am in NY and my daughter has an air conditioned bus a fan by her desk a vest at home and one at school and a spritzer bottle every where she goes. It is listed on ehr IEP as a medical emergency. Let me know personally by email if theres anything mroe I can do for u.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2004 Report Share Posted April 23, 2004 , I was able to get a Company to sponsor Laiken for her vest. It used to be $500 not sure if its the same as her vest still fits. I actually still ahve a small one from when she was like 3. but they keep making them lighter and better. I'm glad u contacted them and usually it is not long for them to get you a vest. I know the first one Laiken ever got came with a teddy bear with a mini vest it was so cute, but that was when was running she jsut recently passed from cancer. She has done a lot wit the maury povich show as well as other talk shows. There should be ways to get sponsers. Even try united way. Hope you get yours soon and enjoy the summer. (mom to Caeden mito myop) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2004 Report Share Posted April 23, 2004 Birmingham, Alabama? We are 3 1/2 hours South of you in ! We come to Children's Hospital in B'ham Horsley Mom to 13 Mito complex 1 & 3 Brittney 18 heat exhaustion Hello from Birmingham! I haven't logged on in a long time,but I was hoping that someone could help me find some printed material on heat exhaustion. I am trying to get an air conditioned bus for my son with mito. He is in a wheelchair and on the bus for over an hour in the heat of the south.Thank you-- I didn't see anything on the umdf website.Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2004 Report Share Posted April 23, 2004 >I haven't logged on in a long time,but I was >hoping that someone could help me find some printed material on heat >exhaustion...I didn't see anything on the umdf >website. There's no article just about problems with heat, but I know I've read things within some of the articles about it. I believe one of Dr. Cohen's articles talks about a child who was out in the heat and ended up in a coma. Also, you might try searching the " Ask the Mito Doc " letters. -- Mom to: Emilie (17), mito--complex IV, cp, ld Kaitlin (17), cp, asthma, a few autonomic symptoms Ian (22) migraines ....and wife to Tim, who has a heart of gold Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2004 Report Share Posted April 23, 2004 >I haven't logged on in a long time,but I was >hoping that someone could help me find some printed material on heat >exhaustion...I didn't see anything on the umdf >website. There's no article just about problems with heat, but I know I've read things within some of the articles about it. I believe one of Dr. Cohen's articles talks about a child who was out in the heat and ended up in a coma. Also, you might try searching the " Ask the Mito Doc " letters. -- Mom to: Emilie (17), mito--complex IV, cp, ld Kaitlin (17), cp, asthma, a few autonomic symptoms Ian (22) migraines ....and wife to Tim, who has a heart of gold Quote Link to comment Share on other sites More sharing options...
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