Sending off a thank you to Andrea
to thank her for her amazing organizational skills, I finally expressed the reservations that make this all so hard at the same time that it inspires so much gratitude. And it occurred to me that it's worthwhile noting my reservations for the record.
I feel a bit guilty about this idea of fundraising. I mean, I know we can't afford 3,000 a month without going into some serious debt, and I know that this whole situation has left me feeling seriously uncertain about whether or not we will always be able to pay for the care Annika needs, but I also know that there are many more kids out there with families in even more dire situations.
So I'm simultaneously relieved that so many people have made such generous offers and also embarrassed a bit, as if we've made a claim to hardship that is not ours to make.
Anyway, I would be crazy not to be seriously grateful. And I am. Grateful, that is. Not crazy. Or only a little crazy, anyway.
Now to ask for another favor while the asking is good.
The reason that setting up a COTA account is not immediate is that we need not only paperwork filled out by Annika's doctors to confirm her legitimacy, but we also need to enlist 3 volunteers to run the campaign. The volunteers include a campaign coordinator, a media coordinator, and a trustee. We haven't yet received the paperwork describing in detail these positions, but basically the campaign coordinator runs the show, the media coordinator makes sure that the events are publicized, and the trustee ensures that donations are accounted for properly and that funds are only given out for approved expenses with receipts and all that. I have a friend back home with experience in public relations who has already volunteered to be either the media or campaign coordinator (Thank you, Jane!). So that leaves two positions we'll need filled before we are up and running. I'm assuming that the campaign and media coordinators should be local, and I know that some of our friends back home read this journal, so I thought I'd throw it open to see if anyone has the time and energy to volunteer. It seems reasonable to me that the trustee for the account wouldn't necessarily need to be local, in these days of electronic transactions, although some of you COTA vets out there might have different advice. I do
know that the trustee cannot be any member of our family.
So if there's anyone out there that feels like they might have the time to take on any of these positions, please drop me a line at moreenaATgmailDOTcom.
I feel like Andrea
, who has already made this page
, and Phantom Scribbler
, who is hosting this discussion
, have already created their own positions of web publicists/coordinators. Geez they are fast. And effective.
Please know that we are trying to go about this in a way that is financially responsible, so that everyone can rest assured that this money is only
going to approved expenses that are not
covered by insurance (so for instance, there would be no double-dipping, "paying" for anything that is already being paid for by some sort of coverage). I think that COTA asks the transplant center to estimate what sort of goal should be set for fundraising. COTA's usual policy is to distribute any unused money to other children's COTA campaigns. I'm not sure what happens if the fundraising actually exceeds
the goal set, but I'm thinking that a good idea would be to donate any excess to the American Liver Foundation's Biliary Atresia Research fund. Biliary Atresia is the liver disease Annika was born with, and it affects about 1 in every 15,000 babies. The cause of the disease is unknown, and there is no cure short of liver transplant, which obviously brings its own set of difficulties. Tanner's mom, Stacy
, gave me this idea, and perhaps the funds could be donated in memory of Jayli
, a beautiful BA baby that many of us still miss.
So that's what I've been thinking, here in Chicago. The snow falling today was really floaty, and Annika loved the site from her 6th floor window. Now that it's dark and she can no longer see the snow, she's indulging her new addiction, Pokemon movies. Oy. She is so
the daughter of a computer scientist.