United Brachial Plexus Network, Inc.

Jennyb

Has he made contact with his dr to let him know? Most dr's have contact with drug reps that the company will help subsidize meds, have study programs, etc..if his dr is no help, tell him to contact the social services program at his local hospital or hospitals. Keep us posted.

Yes I did send a note to the family with resource listings and offering to get together for a "therapy play date" explaining that my child was slightly older and it might be nice to have a chance to talk to another family. I was returned a note that said that they were not interested and that they have been told by their doc that the internet is full of misinformation.

To respond to the post, sorry if you think I am tacky, but my feelings are the same as when I posted. To the other post, we have gone without a lot to provide for my daughter. Ramen noodles and PB&J are staples at our house now. We can be seen with a cooler at our hospital visits because we can't afford to eat out while there. We do not have TV and we have done numerous yard sales till there isn't anything left to put out. If this is the last straw for this family fine. But personally I had a hard time when I saw this family, who has insurance, selling overpriced junk.

BTW before someone brings it up, no we do not have a computer or internet at home, I am at the library.

I posted because I was courious as to how often this occurs. Thank you to all that posted alternative resources.

Christy- We have not come to that point. My husband and I both work. We save what we can and it is amazing how much you can do with out when your really think about it. Also we have called different places that we owe money. When I was off work after my dau. surgery we made arrangments to make partial payment until I was back to work. I have switch jobs, my husband and I can now drive to work together most days and save on auto expenses. At time my husband and I have each taken second jobs. Like I said if this is the last straw for them fine. But, if they are that bad off, medicaid and other agency area available to them.

Marnie- If you think I'm tacky fine. I just have one question for you. Does a FIVE YEAR OLD need a gameboy and a computer?!? Maybe you could send the nintendo money to a charitable orginization so this family would not have to put out a picture of their kid and beg for money in a community where this child will most likely have to grow up.

I am not complaining about our situation. I have my daughter and I would not trade her for anything that money could buy. From rereading the post I guess this is acceptable behavior, fine I will leave it at that.

I send plenty of money to charitable organizations. I don't think that it is your place to judge people, just as it is not my place, that's just the way life is, some have more than others. And no, I guess that a 5 year old does not NEED a gameboy or a computer, but these were gifts given to him from his family!

original poster (whoever you are)

Maybe you could post information from the booklet such as phone number or how we could get in touch with this family, so that maybe those who could, could buy some of the items to help this family. Just a thought. I would be willing.

Marnie

Although I can totally empathize with this family's desperation I would not put my child's picture out there and ask for money. I don't want people to view my daughter as "handicapped" even though she technically is. When Amanda had her first surgery, some friends took up a collection at work and I really did appreciate the cash. It wasn't much but it helped to pay for food and cabfare to the hotel. So, I guess what I'm saying is that I would appreciate any help I can get but to ask for it in such a public manner would not be something I would consider. Just my opinion, I'm not judging anyone who would or did do this.

Original poster/none for today. I must apologise if I have offended you, that was certainly not the intent, even though it is a touchy subject for me, as well as the other members here. It was being judgemental.

I don't know about the state you or others are in but the hospitals we researched they do not accept our states medicaid and I wasn't impressed with the ones that did. Thank goodness I have private insurance, but even then my copays are 20% and 20% of tens of thousands of dollars for one surgery, let alone 3 in less than 18 months plus those 18 months of therapy, other dr appointments to keep an eye on things...Well, we have a lot in common for dinner! As far as other agencies..we have one called "Health Care for Special Needs Children" where I live (used to be called handicapped children) and they worked really hard but couldn't get any assistance to help us out. The one agency in the state to help families travel had a local physician's wife as one of the administrators of the funds (not the final word but one could never get past her!) and she took it upon herself that even though we met the qualifications medically, she would not release any funds until we had a dx of mentally challenged, just to make her feel better about letting loose of the money. She was eventually replaced, we received no funds and I wonder how many other families didn't?

So much for a short apology, I jumped on the band wagon again. Sorry, didn't mean to. So I will sign off with just--sorry that I offended you or whatever my actions made you feel. BTW-I had to turn down an excellent job opportunity because they had limits on the therapies and I couldn't afford to pay for them otherwise so I know how you feel about working two jobs and car pooling with your hubby.

I feel the same way as ,most of the posters here. I do NOT feel it was tacky, it was desparation. We have all been there. Borht my husband and I work, so that we don't have to pay daycare my husband works nights and I work days. I work six days a week and have four children. I would appreciate any kind of help amd although you feel it tacky if it was the last resort, I would do the same......private insurancee isn't all what it cracked up to be and sure I could go the easy way and go on medicaid, but I would have to decrease my hours to do so and guess what,,,,,,that is even more tacky

Im sorry my post was so "tacky" I was being quite flippantthat day, altho I still feel like the other folks have every right to fundraise- I was thinking...
I do know how you feel too- we used to walk and ride bikes everywhere, ate alot of beans and rice and didnt ask for anything either, thankfully there were services galore around that I found right when I needed them- and my mom helped me with travel expenses when I went to Miami and Texas...and we paid off the last part of the therapy bills about 6 mos ago, about a year after he quit- if he had had surgery it would have meant our vehicle again...but I never had to ask the public either, I believe that everything I put into something I get back 10X...if you are scrimping and trying hard to set aside money for that therapy then that therapy is going to be valuable to you- Im not sure if this makes sense, a prosperity principle I believe-
YOU are getting more out of it when you work your butt off for it. I really believe that....It wasnt right for me to express myself like that to you- I apologize...and I commend you for going to the library to use the internet too by the way, great place for the kids to accompany you too