What I need is financial help. I need to get my daughter to another state to see a Chiari specialist & I don't have the finances (used all my resources last round when we traveled to UCLA). Primarily, I just need travel & lodging expenses. Any ideas anyone has given me, so far, involve fundraising & I just can't take that on with everything else I'll trying to get done. I've written a few letters to nonprofit organizations, but have not heard any responses.
My daughter is incredibly miserable, has no life, doesn't sleep much, & I could go on & on, but you all know the rest of the story. I don't think that she can wait as long as it will take me to get the money together.
I'm overwhelmed with trying to make all our decisions. I'm hoping someone has ideas for somewhere to turn that I might be able to get some help. I can't keep wasting my time writing to companies who don't respond. Are there organizations that you know of that might be able to help? Preferably, ones that take fewer steps. I have ideas to try, but they're all time-involved & It's hard to decide where to turn.
Also, I'm wondering about the specialists. Right now, I'm looking at NY, WI, & CO. Feedback??
I am so sorry you have to deal with money issues as well.
Since you are not able to hold a fund raiser..are you active in any groups, church??? I ask b/c sometimes your church will help out and other groups may have a fund for those in need.
The only thing I think of other than that is if you have equity in your home..you could take a line of credit out..naturally, that is another bill you will have to pay back...but the mthly payment ususally isn't too bad if the amount is not excessive.
Let us know how you make out. In thought and prayer.
Have you contacted civic organizations in your area? Such as the Lions Club, local March of Dimes, Ruratins, Gideons, Christian Women's club, The Moose Lodge, Local Churches. Also you might want to visit Social Services. Some health Insurance policies will pay if you have to travel out of your area for a emergency medical situation. Where do you live? Is there not specialists within 50 miles of your home. I would start with your daughters PCP and ask for referrals in your area. Then if they think you need to go out of the area you would have time to check into chartible organizations and your daughter would be getting local treatment to help her get to another step. How old is your daughter? I also think where you live is the key. We have members from all over the world and it's possible someone will know of a specialist. This is a fantastic group. We are here to help you, but we don't have any assistance funds. Please let us know where you live and I will help you find a specialist in your area.
TracyZ-I know this is not a group that provides assistance funds. As I said, I've been searching non-profit organizations & other methods for assistance. I thought maybe people here would have had experience with groups that have been helpful. Didn't mean to make it sound like I was asking for a handout. Especially from a group of people who are dealing with a lot of the same issues. That's why I thought someone here might have had experience with groups who assist with transportation, lodging, etc.
isnt their a group that help ppl with flight, angel wings or something like that- i forgot the name of it....
yahoo groups chiari iam pretty sure thats where i heard a lot about that place- its been a long time since i been involved in that group though,
as for lodging call the place where you are going they may have something like the ronald mcdonald house or similar where you can go. and if they dont they hospital may have a relationship with local hotels where you can get reduced rates.
wait you dont even have a specialt apt for her to go to yet? seems like thats the direction you first need to make, then work on the next steps---- i know you dont want to step too far not knowing if you can make them all, as suggested id start perhaps closer to home if possible- then branch out to the specialists....and before you decide on the direction or location you are going be sure you DO YOUR HOMEWORK on all of them! @ place has different work of operations-make sure you make the right choice for her!!
Thanks for the ideas for lodging & travel. Those are really the only areas I need financial help in. I will follow up on those right away. Thank you, thank you, thank you.
Specialists? We see (or have seen): Neurologist, Neurosurgeon, Neurological Opthamologist, Internist, Doctor of Osteopathy, Gastroenterologist, Chiropractor, 2 emergency room doctors. We also went to UCLA, but could not see Batzdorf, as she is a Peds patient. Next week-2 new doctors: Rheumotologist & a NeuroRadiologist/Interventional Radiologist. Yeah, not really starting out. At the end of my rope, her rope, & everything in between. All resources are zapped emotionally, financially, & mentally. Kind of just trying to hang on. The specialists I mentioned are the ones that our doctor has referred us to next. I am researching them. I get so overwhelmed with making decisions about all of this. Sometimes I just need ideas of what is the next best step to take. I'm a single mom on disability myself (no financial support from their father), with another daughter in college. I'm always stressed trying to figure out the best way to do something & with her condition, hardly anything helps. Doctor thinks the Chiari is exacerbated by some type of autoimmune issue.
razzle51-How have I not heard of Dr. Lali Sekhorn? Is this person near Las Vegas? Do you have any contact info?
Thanks again everyone. It's so nice to have input. Everything I've gotten has been doctor input (I trust few of them however) & research I have done online. There's a lot of info, but it's really hard to narrow down & as I said, I've also found that a lot of Chiari groups don't hang around long, maybe because there aren't enough of us yet?
Oh I missed the second part of your message razzle51- I will check out Dr. DC Sieff. We see a NeuroRadiologist this week, so I will get his input about these 2 doctors.