manitou Posted January 17, 2016 Hello, anyone reading this - I recently met a single mom who has a 12 year old son with Hans-hart syndrome. He was born with only one limb (leg); his other 3 limbs are stumps. She told me how his sister got a bike for Christmas, and that he cried for quite a while because he couldn't ride one. There is a bike in Erie, PA that is a tricycle, and is built to be specifically retrofitted for kids with these types of disabilities. She said the total cost of the bike, the retrofitting, and the stay required in Erie would come to around $4,000.00 total. I have set up a GoFundMe page for her: if you are of the mind, would you please visit this page, consider a contribution, and perhaps forward this to some of your friends? His name is Jaiden Foden. The page is www.gofundme.com/n7j4b95c. (I wish I knew how to create a link!) Thanks! Manitou 3 Share this post Link to post Share on other sites
Tibetan_Ice Posted January 17, 2016 (edited) To create a link you put "http://" In front of the address. then the address itself becomes a link after you save the post. www.gofundme.com/n7j4b95c Becomes (below) http://www.gofundme.com/n7j4b95c To create a link with alternate text, you wrap the link above with the URL and /URL tags encased in square brackets like this. Pay particular attention to the end of the second square bracket... you will see this when you Quote this post... Can you help a twelve year old boy? To see the proper syntax, click on the Quote icon to this post and you will see the correct syntax for the links at the top of the reply. Just copy and paste the whole link into your message. Then after, cancel out so you don't actually create the reply. If you have a computer, you can also go to the advanced options and choose the web link icon, but on small devices you don't get the advanced options.. After you grab the link, you can delete this post (if you have owner permissions), or let me know and I will cut this extra stuff out.. Good luck with your quest. Edited January 17, 2016 by Tibetan_Ice 1 Share this post Link to post Share on other sites
manitou Posted January 17, 2016 Thank you, Tibetan Ice! Hopefully anybody who sees your reply and wishes to donate can do so off your link. I understood about 1/3 of your message - the other 3/4 was over my head, lol. Share this post Link to post Share on other sites
Brian Posted January 17, 2016 I hope my small contribution helps, manitou. 2 Share this post Link to post Share on other sites
manitou Posted January 17, 2016 Thank you so much, Brian! If we can find enough Brians around, surely she will meet her goal. Share this post Link to post Share on other sites
Brian Posted January 17, 2016 A good Brian is hard to find... 1 Share this post Link to post Share on other sites
liminal_luke Posted January 17, 2016 A good Brian is hard to find... You always get the other kind... 1 Share this post Link to post Share on other sites
manitou Posted January 18, 2016 You always get the other kind... Different spelling. That's b-r-a-i-n. 2 Share this post Link to post Share on other sites
manitou Posted January 20, 2016 (edited) Thank you Brian, William, Steve, Lerner, and an anonymous donor from this site for contributing. I wish I could say that the GFM page is getting plenty of action, it's not. I will start going to businesses in the area, and civic organizations. i'm determined to get this tricycle for this young boy. Perhaps Eckhart Tolle would tell me to Leave Life Alone, as in my tag line. But my heart is overriding what Eckhart has to say. Edited January 20, 2016 by manitou 2 Share this post Link to post Share on other sites
manitou Posted January 20, 2016 (edited) Jeff, I'm guessing you're the anonymous donor. This being the case, thank you so much. Or maybe Soaring Crane or vonKrankenhaus? Whomever - thank you! Edited January 20, 2016 by manitou Share this post Link to post Share on other sites
Jeff Posted January 20, 2016 Thank you Brian, William, Steve, Lerner, and an anonymous donor from this site for contributing. I wish I could say that the GFM page is getting plenty of action, it's not. I will start going to businesses in the area, and civic organizations. i'm determined to get this tricycle for this young boy. Perhaps Eckhart Tolle would tell me to Leave Life Alone, as in my tag line. But my heart is overriding what Eckhart has to say. Can't go wrong with listening to your heart on such things. Thanks for the leadership and inspiration. 2 Share this post Link to post Share on other sites
soaring crane Posted January 20, 2016 I'm one of them ;-) 3 Share this post Link to post Share on other sites
manitou Posted January 20, 2016 (edited) Someone made a huge $500 donation this morning, anonymously. If it was any of you folks, I just have no words at all. I just love every single one of you, that's all. I'm going to talk to the mom, Teresa, about lowering the requested amount to $3,000 (we were figuring in the cost of tax, retrofitting, and the trip and stay up in Erie to get it done). She lives from hand to mouth, cleans houses on the days she's not working. Folks might not feel like it's a scam if the price is lower - as per the very intelligent suggestion of The Lerner. If there is any overage, I'll just eat it. Edited January 20, 2016 by manitou 2 Share this post Link to post Share on other sites
manitou Posted January 20, 2016 Damn, Jeff! Thank you, thank you, thank you! Share this post Link to post Share on other sites
manitou Posted January 25, 2016 (edited) You know, I only say this as a reminder to those who have forgotten how truly blessed we are to have each other, us Bums. I have a real nice family in California - real good people. My brother and his family, outstanding niece and nephews. I have an equally nice (albeit bible-thumping) family here in Ohio. Aunts, uncles, cousins. Churchgoers all. Of course, when I started this mission to get Jaiden a bike (a boy whom I've never met - I only know his mom because she waitresses at our favorite Szechuan restaurant) - the first people I thought to send a donation request were to the wonderful people in my family. I almost didn't even post it on the Dao Bums because part of it felt it wouldn't be appropriate, even in Off Topic. But post it I did. Do you know that not one of my wonderful family has kicked in with one cent on this? I even sent out a reminder, thinking maybe somehow the first one got messed up somehow. And yet - you....my Dao Bums friends....have contributed most generously according to your circumstances for a handicapped trike for this little guy. If one of my family members - any one of them - sent out a request for a contribution to a cause they deemed worthy, I would not mull this over at all. I'd just do it. I think we have a tendency sometimes to think that everybody thinks like we do. We maybe forget how special this site is and the people that are on it. But all it takes is sometimes listening to the level of conversation of many folks to realize that we truly are fortunate to have found each other. I mean this with all my heart. I cannot begin to tell you how much I appreciate each and every one of you, donors or not. Even if I've never seen your face, I know your soul - and that means so much to me. We are strange ducks, us Bums. Update on Jaiden's bike - I've been going around town getting donations too, and we seem to be about there. Turns out there is a law firm in Pittsburgh (of all things!) that takes the time to assist in these adaptive bikes for those that need them. Although Jaiden won't qualify (as he doesn't live in Pennsylvania) they will turn us on to the particular bike they use (turns out it was the same one that Jaiden fell in love with in Erie!) and the person who can do the adapting. So the price will be lower than the $3,000 because there won't be a trip to Erie, hotel, food, etc. involved. I'll just kick in with whatever remains. So far we have about $1600 and I don't think it'll be all that much more. Thank you all again. I love you. Edited January 25, 2016 by manitou 3 Share this post Link to post Share on other sites
Brian Posted January 25, 2016 Before you kick in the rest, let the forum know what that gap is, OK? 3 Share this post Link to post Share on other sites
manitou Posted January 25, 2016 Thank you again, Brian. Share this post Link to post Share on other sites
manitou Posted January 26, 2016 Is there a Bruce in our midst? Share this post Link to post Share on other sites
mostly_empty Posted January 26, 2016 Is there a Bruce in our midst? That would be me.... but since I'm not up to much I usually keep a nom de plume for DaoBums... 2 Share this post Link to post Share on other sites
manitou Posted January 26, 2016 Well, if you're the Bruce that just donated - thank you so very much! We're getting there. (LOL - is any Daoist-oriented one up to much?) Mostly_empty - I like that nome de plume. Share this post Link to post Share on other sites
mostly_empty Posted January 27, 2016 Well, if you're the Bruce that just donated - thank you so very much! We're getting there. (LOL - is any Daoist-oriented one up to much?) Mostly_empty - I like that nome de plume. Dear Manitou, It is a little backwards for you to be thanking me. Thank you for presenting this opportunity for us. 2 Share this post Link to post Share on other sites
manitou Posted January 28, 2016 Well, Backwards 'R Us... Share this post Link to post Share on other sites
manitou Posted February 7, 2016 (edited) Update on the Jaiden situation: Hello, friends. The funding page has collected $1300 and change - I am not actively soliciting more donations around town until we can really get this cost pinned down. We had a stroke of good luck. It turns out that I found a man who has no use of his legs, and he got an adult trike called a "Quickie" which is adaptable. The company is located up in Youngstown, OH, only about 40 miles away. They will even bill Medicaid if it is determined that there is a medical necessity for one (I would think there is in this case, as Jaiden is gaining weight as he is unable to exercise much at all - that can't be good for his heart, circulation, etc). Plus, they will send out a physical therapist / adaptor person to actually come here to Jaiden, rather than us having to take him up to Erie, as we previously thought. This is really good news. I gave the family this information yesterday. The grandmother expressed concern that if Medicaid got involved, they might get dinged for a commensurate amount as it would be considered 'income' from the donations which have come in - although if this happens, we can rob Peter to pay Paul and just have the donations to fill in the gap. One way or the other, I'm going to make sure this boy gets his trike - I couldn't live with myself if we got his hopes up, only to have them dashed over some Medicaid technicalities. Anyone reading this, thank you so much for caring. As I see it, We Are Jaiden, in our singularity. In our good moments when we realize the Oneness. I've recently taken out a line of credit against my house (for the purpose of getting a mobile home in Florida for the winters) and it would be such a small thing to just add to the debt of anything I purchase for this purpose - the 'junk' that we take for granted. It would make no discernible difference to me at all to pay a few extra bucks a month to repay this. And it could change a young boy's life forever. I love you all. Barbara Edited February 7, 2016 by manitou 1 Share this post Link to post Share on other sites
Kar3n Posted February 7, 2016 The donations are deemed as unearned income. If he is receiving SSI (Social Security Income) and not SSD (Social Security Disability); the SS Administration will "ding" them to the extent of possibly losing benefits, including Medicare. "The Supplemental Security Income (SSI) program pays benefits to disabled adults and children who have limited income and resources," Nicole Tiggeman said in an email. "The law requires Social Security to consider the income and resources of the individual, parents or spouses when deciding an SSI recipient’s initial and continuing eligibility to SSI benefits." http://www.phillyvoice.com/success-gofundme-jeopardizes-boys-medical-benefits/ It is a sad state of affairs when we can not temporarily subsidize others' livelihood without them being penalized. I hope that the family can find a way to get this young man his bike and not fall victim to our flawed system. 1 Share this post Link to post Share on other sites
manitou Posted February 7, 2016 (edited) I just looked at the article. It says the 'resource limit' (not sure what that is) is $2,000. If there has been $1300 raised (and we raise no more on the gofundme site, we can lower the profile and keep it out of the fundraising site), I wonder if that would be okay? Flawed system isn't the word for it! I'm guessing the adaptive bike company may know more about this as they deal with it all the time. I don't know if he's SSI or SSD. The situation in the article (as to the genetic origin of his disability) sounds very similar, and that boy was on SSI. Do you know any more about the resource limit? Thanks a million for the heads up, Kar3n! Edited February 7, 2016 by manitou 1 Share this post Link to post Share on other sites
