tag:blogger.com,1999:blog-2600278351249979209.post8721636630203182402..comments2023-06-22T04:20:49.280-07:00Comments on happy being trevy: My, how helpful you are. NOT.Danielle http://www.blogger.com/profile/04484341169494632974noreply@blogger.comBlogger19125tag:blogger.com,1999:blog-2600278351249979209.post-1653671626566597812009-07-16T05:06:43.277-07:002009-07-16T05:06:43.277-07:00Just hear there is a company called Miracle Flight...Just hear there is a company called Miracle Flights too.JSmith5780https://www.blogger.com/profile/16954759123115546248noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-87604268766225449402009-07-14T22:02:52.313-07:002009-07-14T22:02:52.313-07:00I found out recently that Continental has a progra...I found out recently that Continental has a program where they help with families...you just have to show proof. I don't have any information on it, but I will see what I can find out! Ya...not very nice email!!!Jackson's Bloghttps://www.blogger.com/profile/17048751263720856851noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-36171977934416881982009-07-14T10:26:40.936-07:002009-07-14T10:26:40.936-07:00BOOOOOO Mary Ann Thornton
Very bad form indeed!!!...BOOOOOO Mary Ann Thornton<br /><br />Very bad form indeed!!!<br /><br />How frusteratingDawsonhttps://www.blogger.com/profile/04109775702931251072noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-60491069240937029582009-07-14T08:34:54.794-07:002009-07-14T08:34:54.794-07:00wow, I love her title.."Information Specialis...wow, I love her title.."Information Specialist"?? that's a misnomer if ever there was one.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-18776005003325182162009-07-14T07:10:30.501-07:002009-07-14T07:10:30.501-07:00Yeah...I can see why you'd be frustrated. I th...Yeah...I can see why you'd be frustrated. I think a person, even if they don't have the answers for you, should keep in mind what they are dealing with and if they don't have the time or need to refer you then just use some common courtesy. That's all one needs to do really in order to at least not come across as an asshat.<br /><br />Let us know what happens with the local group.blogzillyhttps://www.blogger.com/profile/08268388544631653375noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-44639287743637440982009-07-13T19:52:57.926-07:002009-07-13T19:52:57.926-07:00Well, it sounds like everyone has given you some g...Well, it sounds like everyone has given you some good suggestions already...I hope one of them will be your answer.....<br /><br />I worked for our local Easter Seals for 15 years up until 2 years ago....I ran the Orthopedic Clinics...It worked out well BECAUSE I had Colby AND compassion BECAUSE of him....And you know what? If I had had an attitude like that, my butt would have been fired on the spot!....Makes me sick....<br /><br />Sorry I didn't have a magic answer for you....Hang in there...<br /><br />CyndiColbyhttps://www.blogger.com/profile/05100340319951092104noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-24031983920047070512009-07-13T18:31:36.191-07:002009-07-13T18:31:36.191-07:00Wow. what a ray of sunshine she sounds like!! Sor...Wow. what a ray of sunshine she sounds like!! Sorry, i'm just really cynical these days. We've never received one ioda of help from anybody (federal, local, etc.) financially so I just don't even bother any more. BUT..I would definitely try the angel flights b/c that is ridiculous to pay that much for airfare!! Do you know anybody that flies alot for business that might be willing to donate some frequent flier miles. If it comes down to it, maybe you could do some sort of fundraiser? That's all I've got for ideas. =-)Monica~ James~ Connorhttps://www.blogger.com/profile/02401218928219589164noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-13759598302173200672009-07-13T18:20:13.700-07:002009-07-13T18:20:13.700-07:00It's very discomforting to know that one of th...It's very discomforting to know that one of the only organizations out there to help families that have kids with IS is so unhelpful. <br /><br />Not only is there not enough support and awareness, there is like no help. That just makes me sad and angry. Like having this horrible thing isn't bad enough, but now you are just reminded of how much more it hurts and difficult things are already and then you have people like Mary Ann working for what? ..obviously not for the cause and compassion.<br /><br />Maybe they should get families of kids with IS or some form of epilepsy working for them. I mean yeah, I understand they can't help everyone, but maybe someone with a heart or common sense to be more personal in their response would be best for everyone concerned. Okay..I know I am rambling, but it's all true (in my mind at least). <br /><br />I do hope and pray that you can find some sort of help with the travel expenses. I mean for goodness sakes, this trip is what you have been waiting for. This trip is the reason for the happy dance and all those yet to come.MJStumphttps://www.blogger.com/profile/05506100079795141155noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-47903251883317618502009-07-13T18:08:36.937-07:002009-07-13T18:08:36.937-07:00I.am.shocked.
No cursing comes to my mind. Jus...I.am.shocked. <br /><br />No cursing comes to my mind. Just evil vengeful what-can-I-do thoughts. Ahem. Self-correcting. <br /><br />I would say different things than I will put here, if we were talking, you know.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-25098680421675176612009-07-13T17:23:02.312-07:002009-07-13T17:23:02.312-07:00I think you should definitely pursue the angel fli...I think you should definitely pursue the angel flight. I know many families who have used their service. It is a small plane, but, it's free.... Could save you lots of money!!<br />Marcia K<br />Hannah and BlitzenAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-1130406042744736452009-07-13T13:38:40.986-07:002009-07-13T13:38:40.986-07:00Check out http://www.uhccf.org/apply.html
I looke...Check out http://www.uhccf.org/apply.html<br /><br />I looked to see if they would cover travel expenses, but I didn't find any information. You have to meet certain financial criteria and have health insurance. <br /><br />Of course, you can try your church or other local organizations. My daughter's swim team donated their swimathon money to us for our travel expenses.<br /><br />Here is the website for Angel Flights. http://www.aaippt.org/Help_With_Medical_Travel_For_Children.html<br /><br />Erin M.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-17678074368086970192009-07-13T13:03:28.064-07:002009-07-13T13:03:28.064-07:00Re: the Epilepsy Foundation. Our local branch is c...Re: the Epilepsy Foundation. Our local branch is considered one of the tops in the country. I am very involved with them, even running their parent support group. Last December I got to meet a few of the top people from the Foundation. They met with a few of the consumers for opinions on how they are doing and what should be done to make them better. Whether it's a good thing or not, they already knew about me before the meeting. I told them that I delayed becoming involved because me (and the rest of the IS community) felt we didn't fit in and that the Foundation didn't understand us or the other families dealing with catastrophic epilepsies. The President said he absolutely agreed and they are working on strengthening that portion of their services and educating their branches on IS, LGS and LKS. I told him I was more than happy to work with their National Board if they needed a parent rep. he took my information. I can only hope he's true to his word.<br /><br />Part of the reason I feel my local branch is so helpful is because I have taken it upon myself to educate them about IS. And they have gladly accepted that help. Any new parents with IS kids they direct to me for support. I guess what I am saying is we (the familes) need to make it a two way street. It helps that my local foundation is only 20 minutes away. I suppose if they were further from me, the scenario may be different.<br /><br />I'm not against CURE, the more people working to "cure" epilepsy, the better, but I would try and reach out to your local EF branch and see what they offer. And see if they are willing to increase their IS knowledge to support families like ours.JSmith5780https://www.blogger.com/profile/16954759123115546248noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-71943080586036133792009-07-13T12:41:51.889-07:002009-07-13T12:41:51.889-07:00IMO, the Epilepsy Foundation does NOTHING to help ...IMO, the Epilepsy Foundation does NOTHING to help those with IS. They don't offer any resources, or hope. It feels to me like their only point is to make people feel "good" about the possibilities of living with epilepsy. For those who are, you know, still able to drive and all that. I can only wish for that.<br /><br />That's why I don't really participate in their fundraisers or anything. I MUCH prefer to give my time & effort to CURE.<br /><br />Regardless, ugh on the expenses. I can totally relate. We're still paying for our trip out there in Feb.Katiehttps://www.blogger.com/profile/07032813023109980348noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-20465536081273958262009-07-13T09:46:04.427-07:002009-07-13T09:46:04.427-07:00Doesn't that suck ass??? I was told to go to ...Doesn't that suck ass??? I was told to go to MHMR for my son and to get help with therapy. I filled out a CRAPLOAD of paperwork and was told I didn't qualify b/c I have insurance. <br /><br />I have never ever gotten any assistance with my son EVER. I just needed help with therapy.<br />So frustrating!kristihttps://www.blogger.com/profile/17987700142247888708noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-52323863279060265402009-07-13T09:41:13.506-07:002009-07-13T09:41:13.506-07:00Ok let me think here. I know there are some compa...Ok let me think here. I know there are some companies that do flights and stuff, I will check my piles of files and send you an email. But try the airlines and explain whats its for and they just might give you a break, and if you have a doctors note that would probably help. Are you coming alone just you and Trevy? Cause if you need someone to help take a shift while you're doing a 24 VEEG or something let me know, I'm not far away at all and I've done my fair share of them!Melaniehttps://www.blogger.com/profile/14976460220405392152noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-69138273048106094642009-07-13T09:05:44.558-07:002009-07-13T09:05:44.558-07:00Oh, that definitely sucks. Sucks. Sucks. Sucks! ...Oh, that definitely sucks. Sucks. Sucks. Sucks! And so does Miss Mary Ann...<br /><br />We couldn't get a discount through Continental, but maybe Southwest offers one. But I do know several hotels in Detroit do offer discounts for medical stays if that helps.<br /><br />Good luck...Hollihttps://www.blogger.com/profile/00535016211470087504noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-19696382857858671772009-07-13T08:27:00.094-07:002009-07-13T08:27:00.094-07:00A couple things.
I'm not surprised about the ...A couple things.<br /><br />I'm not surprised about the Penry Fund, I still have an application waiting ffrom February. It was supposed to be funded again in June, but I've heard nothing back.<br /><br />Her insincerity though is sad. Also, don't hold out hope for EF of MA. I've heard they aren't very helpful. I'd love it though if they've changed.<br /><br />I would definitely say call the airlines. If not, email Angel on teh yahoo group. She has a list of all the med flight companies, like Angel Flight. They are definitely worth a call.<br /><br />GOOD LUCK!JSmith5780https://www.blogger.com/profile/16954759123115546248noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-64511654382876610742009-07-13T08:08:05.016-07:002009-07-13T08:08:05.016-07:00Those are the expedia rates!
And I am going to c...Those are the expedia rates! <br /><br />And I am going to call the airlines and ask. Can't hurt. <br /><br />...dDanielle https://www.blogger.com/profile/04484341169494632974noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-63427191102617508532009-07-13T08:04:30.771-07:002009-07-13T08:04:30.771-07:00Wow, talk about cold. I think this Mary Ann has it...Wow, talk about cold. I think this Mary Ann has it down to a science. <br /><br />If you have to, try looking into expedia or one of those other online airline deal places. They sometimes offer better deals. And, yes, MAKE THE CALL TO THE AIRLINE ITSELF! I believe they do offer discounted rates to families that need to go elsewhere for medical help.Adestahttps://www.blogger.com/profile/08255048845212923176noreply@blogger.com