Chronically ill child - fundraiser???

[k2bdeutmeyer]

DD3.5 has an unknown metabolic condition that requires her to be hospitalized for 2-3 days pretty much anytime she's sick even with something as simple as a cold/ear infection. Last year she was hospitalized 7 times between July and March, and had 4 specialty appointments between September and April requiring a lot of blood draws and a skin biopsy. The poor thing has been through so much. (If you want more details and a full history, visit here)

 

Anyway, as we sit here in the hospital yet again, and I think about the cold/flu season ahead of us I just feel sick to my stomach. She's already been put through so much and already has a full day of doctor's appointments scheduled for Oct. 4th including an ultrasound and surely more blood tests. I want to do something for her. I want to show her how special she is, and how PROUD I am of her for being so strong through all this. She is an AMAZING little girl (she didn't even flinch when getting her IV this morning).

 

So, I was thinking along the lines of a mini Make-A-Wish. I am a photographer and thought maybe it would be cool to do some sort of day where people could come get photos taken of their child say at the park and make a donation to DD. We would then use the $$ to do something special for her (what would depend on how much we raised I suppose).

 

Obviously I'm just in the idea stage, but I'm feeling a bit awkward about it. Is it appropriate to do this for your OWN child? I don't want to look like I'm out begging for money by any means. I would do it for a friend in a heartbeat, but I'm just not sure it's appropriate to do for your own child. Insight? Thoughts?

 

Thanks!!

[Liz CA]

I can understand the reluctance to stage something for your own child. Could you ask friends and family to be there as well and to distribute flyers for the event ahead of time?

I think the idea with photographing people and a donation is great since professional photography is usually expensive.

 

 

[specialmama]

I had to raise 20 grande for my son's first guide dog, so I humbly went to someone who I know could be the backbone of the event. I went to an aunt and uncle who love to fundraise and organize and socialize. They did it all! They organized a walk, complete with radio presence, food, professional signs with my son's picture on them, awards for those walkers who raised the most money, etc. I just had to show up and be the face that accepted the cheque for 20 grande and thank people. In your case, you should get someone to claim responsibility for the event, even if you're the one doing the pictures. Are there any businesses or talent you know of that would like to join you for a day? A hot dog vendor? A face painter? Someone to do pony rides? Musicians? It's kind of like hosting your own bridal shower: just not cool. It is great to have someone orchestrating the whole thing, especially because your family is the beneficiary. :grouphug:

[Ottakee]

I would see about the real Make A Wish thing. My daughters both qualified and they have life threatening but not terminal mitochondrial disorders. We are waiting for their wishes to be granted right now.

 

I would fill out their paperwork and then call the top nurse at the specialists office to give them a "heads up" as they will fill out the paperwork for the wish to see if she qualifies or not.

 

I know right now most mitochondrial disorders do qualify, not sure on what your daughter has.

[angela in ohio]

I had to raise 20 grande for my son's first guide dog, so I humbly went to someone who I know could be the backbone of the event. I went to an aunt and uncle who love to fundraise and organize and socialize. They did it all! They organized a walk, complete with radio presence, food, professional signs with my son's picture on them, awards for those walkers who raised the most money, etc. I just had to show up and be the face that accepted the cheque for 20 grande and thank people. In your case, you should get someone to claim responsibility for the event, even if you're the one doing the pictures. Are there any businesses or talent you know of that would like to join you for a day? A hot dog vendor? A face painter? Someone to do pony rides? Musicians? It's kind of like hosting your own bridal shower: just not cool. It is great to have someone orchestrating the whole thing, especially because your family is the beneficiary. :grouphug:

 

:iagree:

 

There is a mom here who fundraises for her own dd in this way. It is not well looked upon, and her every expenditure is now scrutinized ("look at what they bought, and we had to pay for her ____." You are opening yourself up to public scrutiny when you ask for funds publicly.

 

I would go through the Make-a-Wish Foundation if that is what you are interested in. Then you could donate your services, and your dd would receive her wish, just not directly one paying for the other. It would also avoid any messy tax implications of your earning money and then donating it to your dd, who is not an eligible charitable deduction, or the people who pay/donate thinking that it would be a charitable contribution.

[k2bdeutmeyer]

I think I just feel a little "greedy" doing that. There are so many kids out there that are so much sicker than she is.......

[katilac]

You need someone else to "front" for the event. Even if you take a big part in it and raise most of the money via the photography, someone else needs to be doing the promotion and I would have at least a couple of other activities. It just sounds much better for someone else to say "please come out and support the Smith family" rather than you saying "please come out and support my family," y'know? It also makes it much more likely that the event might get donations from the business community, or publicity from the community news section of the paper. A church or service club is even better.

 

If you want to do it on your own, then you need to just do it without mentioning the reason or your dd's illness, and charge whatever amount you wish.

[k2bdeutmeyer]

You are opening yourself up to public scrutiny when you ask for funds publicly.

 

It would also avoid any messy tax implications of your earning money and then donating it to your dd, who is not an eligible charitable deduction, or the people who pay/donate thinking that it would be a charitable contribution.

 

Never thought about that aspect of it. Maybe it's not worth the trouble.

[Cera]

You could always apply for a make a wish trip and if it is granted organize a fundraiser for the program as a thank you for what they provided your daughter. People would be contributing to a recognized nonprofit rather than an individual which many prefer and you would be able to "pay them back" so to speak for the trip your daughter received.

[katilac]

You could always apply for a make a wish trip and if it is granted organize a fundraiser for the program as a thank you for what they provided your daughter. People would be contributing to a recognized nonprofit rather than an individual which many prefer and you would be able to "pay them back" so to speak for the trip your daughter received.

 

I think this is the best idea so far!

[Whereneverever]

I think this is the best idea so far!

:iagree:

Me, too!

[k2bdeutmeyer]

I just wanted to update that I did apply to the Make-A-Wish foundation for her and got a call today to ask me a few more details. They will be contacting her dr this week to determine if she is eligible and then will call me back.

 

Thanks for the push I needed! I'm still feeling a little weird about it, but.....

[Parrothead]

Wow! That was quick. I hope it works out for your dd.

[Ottakee]

I just wanted to update that I did apply to the Make-A-Wish foundation for her and got a call today to ask me a few more details. They will be contacting her dr this week to determine if she is eligible and then will call me back.

 

Thanks for the push I needed! I'm still feeling a little weird about it, but.....

 

Glad to hear you applied. I know what you mean about feeling a little weird about this whole thing. They do have their guidelines and I guess if my girls meet them, then I should let them have this special thing. My girls both have extremely rare mitochondrial disorders and while they look healthy and day to day health seems OK, they have a lot of underlying/hidden issues including IQs that seem to be falling over the years.

[k2bdeutmeyer]

What's even harder is the fact that we don't even really have an official diagnosis. We have a pretty good prospect...and testing for it has been done, but we won't have results for 2 months. So, for now, she has a very generic diagnosis that more accurately describes her symptoms than names her disorder.