Okay...so this post will be a bit ranty. Sorry. Just the way it is.
So with all the SouthWest ads on tv you'd think we could book a cheaper flight from here to Detroit.
Evidently...Detroit isn't a happening place. The cheaper tix will run us around $350 per person. That's with a two hour layover somewhere. Extending our travel time. Which isn't fun solo...and I don't anticipate it being more fun with a toddler. Who is really a baby. Cognitively speaking. Wish the airlines could nix his ticket with that in mind. Not that I've called and asked yet. It's just...ya know...doubt it.
We can get a direct flight. Two hours from here to there. Straight up!
But it'll cost nearly $500 per person.
I know... I know... I was all big talk about making payments for his brain surgery...if came to that. But it just sucks that the cost of travel rivals that of an over-nighter inpatient.
Sooooooo...I thought I'd send an email out the the Epilepsy Foundation. I mean...this should be exactly the kinda thing they exist to help out with. They certainly pimp themselves that way.
Can't get much more dramatic (ahem...sexy...for fundraising purposes) than helping rescue a sick baby who has spent the past year (which is another post) suffering from 100s of seizures on a daily basis.
Can you?
So I thought what the hay?! I'll shoot them an email. Which of course I'm going to copy & paste for your reading pleasure. Sorry guys...it's becoming quite the habit. But it's one-a those things you just can't make up. In my estimation anyway...
*******
(this email was sent directly to the Epilepsy Foundation headquarters contact for the Kiffen J. Penry Fund)
Dear Mary Ann,
I was in touch with Donna Meltzer...and she put me in touch with you.
My son has Infantile Spasms, a catastrophic form of epilepsy. Medications have failed to bring him seizure freedom...but a new option has just opened up for him. Dr. Harry Chugani of Detroit Children's has reviewed some of his testing and feels that surgery is an option for him! This is huge...possibly life altering...news for us!
We are in RI...so the expenses of travelling to Detroit for both the consult and then the surgery will be pretty heavy. I understand that you have a fund that we could possibly apply for help from?
Would you please give me the information I need to get the ball rolling? Also...if you have any other ideas please forward them to me!
Thanks SO much!
...danielle
*******
(her very tidy response...please notice there is no personal touch...like, I don't know, USING MY NAME!)
We have The J. Kiffin Penry Travel Assistance Fund—unfortunately we are not accepting applications at this time.
Mary Ann Thornton
Information Specialist
Epilepsy Foundation
The Epilepsy Resource Center
mthornton@efa.org
Main #301-459-3700
Fax # 301-918-2103
Website: www.epilepsyfoundation.org
"Not another moment lost to seizures" (Nice obviously heart-felt tag line. Pardon me while I barf.)
******
(my tempered response to her very compassionate reply)
That's a bummer.
Since this is your area of specialty I'm hoping you might have an idea what other options are out there? Grants? Ect?
Any help you can offer would be a huge help!
...danielle
******
(And here's the zinger where she completely persuaded me that she's 100% into helping families dealing with epilepsy to the tune of 100s of seizures daily! Not a another moment lost people!)
I have to refer to you The Epilepsy Foundation in Massachusetts—their telephone numbers are (617)506-6041 or (888) 576-9996.
Mary Ann Thornton
Information Specialist
Epilepsy Foundation
The Epilepsy Resource Center
mthornton@efa.org
Main #301-459-3700
Fax # 301-918-2103
Website: www.epilepsyfoundation.org
"Not another moment lost to seizures"
*******
Nice.
And yes...my internal response is not appropriate for this blog. Pardon me while I go mentally wash my potty mind out with soap.
19 comments:
Wow, talk about cold. I think this Mary Ann has it down to a science.
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.
Those are the expedia rates!
And I am going to call the airlines and ask. Can't hurt.
...d
A couple things.
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.
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.
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.
GOOD LUCK!
Oh, that definitely sucks. Sucks. Sucks. Sucks! And so does Miss Mary Ann...
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.
Good luck...
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!
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.
I have never ever gotten any assistance with my son EVER. I just needed help with therapy.
So frustrating!
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.
That's why I don't really participate in their fundraisers or anything. I MUCH prefer to give my time & effort to CURE.
Regardless, ugh on the expenses. I can totally relate. We're still paying for our trip out there in Feb.
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.
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.
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.
Check out http://www.uhccf.org/apply.html
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.
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.
Here is the website for Angel Flights. http://www.aaippt.org/Help_With_Medical_Travel_For_Children.html
Erin M.
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!!
Marcia K
Hannah and Blitzen
I.am.shocked.
No cursing comes to my mind. Just evil vengeful what-can-I-do thoughts. Ahem. Self-correcting.
I would say different things than I will put here, if we were talking, you know.
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.
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.
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).
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.
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. =-)
Well, it sounds like everyone has given you some good suggestions already...I hope one of them will be your answer.....
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....
Sorry I didn't have a magic answer for you....Hang in there...
Cyndi
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.
Let us know what happens with the local group.
wow, I love her title.."Information Specialist"?? that's a misnomer if ever there was one.
BOOOOOO Mary Ann Thornton
Very bad form indeed!!!
How frusterating
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!!!
Just hear there is a company called Miracle Flights too.
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