At the fundraising meeting a couple of nights ago, a good friend brought up that they were worried about us financially, and they felt that the fundraiser should be focused on Hannah and not on raising funds for research. They also felt that people would be more willing to donate to a family instead of a “cause” at a neighborhood event.
After talking to a few long-time friends about this, they agreed that these friends were looking out for us, probably when we weren’t looking out for ourselves.
It made me really think over the last couple of days (like I haven’t been doing that enough lately — see what happens when I slow down?) about our financial situation. Yes, it sucks. Now that I am no longer bringing in an income, we are living off our savings to make up for that income. I know it won’t last forever.
I have NO problem with the fundraiser and raising money for GD23 research, because that is the only shot we have of saving Hannah’s life. Yet, I don’t want to be considered a personal charity case, either. I don’t know why it is so hard for me to accept people wanting to help us personally like that. But are we being irresponsible parents by trying so hard to raise money for research and not thinking of ourselves and our family? Yet, if we do accept money for ourselves and we lose Hannah, I’m not sure I could handle the guilt of thinking that we didn’t try everything we could to save her. Then what about Ethan and Abby’s future if we are forced into a more serious financial situation?
My brain hurts. I wish I knew what to do, what was the right answer. Objectively, if it was someone else’s situation, I would tell them they had to protect their family first. But in my heart, I don’t know if I could handle the guilt if we lose Hannah because we didn’t try everything we could.
If your family is stressed out and suffering from a lack of cash flow, it would be reasonable to accept cash to ease some of your “secondary” stress – the first being trying to help Hannah survive. There is no right or wrong answer here and I don’t think you’re a “charity case” for accepting cash to help your family in a time of crisis. I think you are doing all you can and then some to get awareness out there for GD 2/3.
Is there a specific group you are donating to? (the children’s gauchers research fund?) How much money do they need to test treatments on a mouse? What I mean is, if the goal is 10,000, would that kind of money be successful at furthering GD research or would it be better used at supporting your family in this trying time?
I don’t feel like this is coming out right…but again, you aren’t a charity case.
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I think you need to find a good balance – what makes you comfortable. maybe every so many fundraisers are for Hannah’s medical expenses and not research? tough…you need to make sure your family stays afloat, but also want to do everything to find a cure.
Oh hun, I understand so well.
You haven’t choosen to get into a financially burdening situation and it’s great your friends watch out for you.
Would it help you to make a fund for Hannah, so you can receive help for the costs for her, so those costs are not burdening on the family budget?
We’re in a financially bad situation because of the costs for our sons.
Especially the last years I have to tell my girls “no” for normal things far too often to my feeling. They’re not only dealing with the psychological and social consequences of having brothers with special needs, but also with the financial consequences.
We moms always want to do all we can, and one of the most difficult issues is to accept that we can’t speed up research.
What Melissan writes is very true: how much money is needed for improvement of research?
Is there an international organisation coordinating fundamental research?
Wat is their view on fundraising?
Because more money doesn’t always mean improvement of research.
To get good research done good researchers are needed, places to conduct research and researchmaterials, as well as enough animals and people for trials.
Also be aware for “empty” foundations. Some foundations are collecting money to pay a few people who do nothing else than literature research.
Right now, it’s nice to have overviews of what’s done, but what’s really needed is a break through in knowledge, so that’s fundamental research.
Another view on matters is realising that there are short term needs and long term needs.
Research results will not be available in the short term, unless already conducted research is successful.
When it’s possible to invest in improvement of research, the effects will be available over a few years at the earliest.
By then the financial situation of your family might be so bad you have to work to keep things running and leave Hannah in other hands.
Your friends want you to enable to stay at home and be her mother as good as you can.
When you’re terribly tired, do you accept them giving a hand? Making coffee, doing the dishes?
Maybe seeing it from that point of view it’s not so bad accepting some money to spend it your own way.
When I would be near your home I would also offer you financial help, because it would enable you to do for your family what you want to do, and what I as a friend can’t give.
Hugs
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I think if you are going to raise funds for yourselves per se, you have to decide on what exactly you are going to use the funds for and make that clear IN BIG LETTERS to everyone (i.e. Hannah’s hospital bill). If you don’t, people will forever judge you and how you spend money. If you buy a new car, there will be someone saying “I gave them $20 and they blow it on such a lavish car” or if you are at the Starbucks treating yourself to a latte, there will be someone saying “Oh, that’s what she spent MY money on”. People are idiots and tend to do this kind of stuff, believe me. When my dad died when I was young, my mom refused a benefit for my brother and I for this very reason. Just a thought. I know it’s ugly, but you know it happens. I think if you establish exactly where the money is going, it might lessen the judgements.
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