Can Anyone help?

This is what I know so far as we are in a similar situation. The best income still isn't enough. Christopher Reeve had to have fundraisers and he was a movie star! I assume you have Katie Beckett and are wondering how to do this and not lose your medicaid. I'm not a lawyer, just my research so take it for what it's worth. You have to establish a Special Needs Trust or a 3rd Party Special Needs Trust. Any income that you get to pay for medical expenses goes into this account. I believe it has to be set up as a non-profit for tax purposes maybe. Again, not so sure about that. You'll definitely probably need to contact an attorney/advocate to help and someone on this board may know a lot more than I do. You can certainly raise money to help pay for your costs. We had been thinking it would look best for someone to "sponsor" this and have others in charge so we didn't look like beggers. We have a nice honda odyssey and live in a nice house...but again, it doesn't matter how much nice things you have. We'll lose it all at the rate we're going. We also considered spaghetti suppers with people at church (who know and love us and know we're having rough times). We thought about doing a "bingo night" where people come and play games and all the prizes are donated. You charge for getting to come in the door. Food is also donated. You could raise several thousand easily this way probably. Golf tournaments are big down here. You can have companies sponsor the holes. You have 18 holes. If you charged $100-$200 per hole, that's nothing for a company to spend on advertising. Also, a lot of company's won't just give you a check because they can't write it off if they just pay you, but if it's advertising---that's a tax deduction. Then you can also charge say $50 per practice green for advertising. Then you can have food that is donated and you can give the players a "free" lunch, but you charge each player $25-$50 to participate. And so on, you can do other things with that as well to try to earn more money. There are coupon books that schools use. Candy bars, etc. Home Interiors does fundraising as well as Premiere Jewelry. We have a friend doing a Premiere Jewelry fundraiser for us soon. Another one I've seen that's nice for the kids, is a festival day. You get people to donate a couple of bouncy things, have a couple of goats, sheep, etc from a local farm person for a little petting zoo...have food donated and charge for the food. Charge for rides (bouncy thing and anything else), have a hay ride, dunkin booth, etc. People love to do fun things like that on a nice Saturday and will spend money on their kids a lot faster than themselves, espeically if they know they're helping someone. Sorry this is so long. I could go on all night. We are going to wait before we do these things until our dna sequencing comes back and we know our exact mutation, etc. We're also waiting on a muscle biopsy date for our other son who we are pretty sure is also affected. Take care and good luck! Brandi

Your local "Lions club" may also be of help. Ours just provided a child with hearing aids and glasses. They also run a guide dog chapter for handicap persons. They may even be able to assist in your fundraising by use of thier facilities and volunteers.It may be worth the effort to have coffee with someone on the board and explain your circumstances. They are all volunteers, wanting to serve thier communities, helping those in need. All the best!

Thank You so much for all the great advice.

This reply is quite a bit after the fact, but I made a website for our daughter, looking for personal donations and people to do fundraisers for us. It was not a non-for-profit and not tax deductible. People donated on their own good will. The website was passed along to a lot of people, so in our community people did start doing small fundraisers for us, which did help. I only published the website about 5-6 months before our daughter passed away, so am not sure what more would have come of it. I suppose people just trusted that we did use the money for our daughter, which we did. We had a bank account set with her name on it, but nothing like a trust or anything fancy. Hope you are receiving some help by now.