Help for a baby with Spinal Muscular Athophy Type 1
Hi Everyone,
I’m @ciag and I create this account to raise money for a cousin’s son (Facundo Barceló Valenzuela) he is a really special baby born on December 17th, 2015, with a strange disease called Spinal Muscular Athophy (SMA) Type 1 which is the most severe form of SMA known, for your information prevalence is reported to be approximately 1 in 53,000 individuals. We live in Chile and here all the associated expenses are not covered completely by any healthcare insurance. (Sorry for any misspelling)
In brief, i can tell you that SMA is a genetic disease which causes progressive loss of movement, muscle weakness and hypotonia which is diagnosed most of the time within 6 months after birth. This condition may affect crawling and walking ability, also the movement of arms, hands, head and neck, breathing and swallowing difficulties (in some cases the patient could never sit by themselves). For more information about SMA and types of this disease please look at this page.
As almost every genetic disease, this has not any known treatment or cure, but there are a range of options aimed at managing symptoms, reducing complications of muscle weakness and maintaining the best possible quality life, as you can see here. Those cares and complex therapies, complemented with all the love of his family, allow him to be alive.
The problem is that, at this moment they need something like $5,000 dollars to keep Facundo alive every month, which in Chile is a ridiculous amount of money, so at this moment everything is really complex to them. As i told you before, no insurance healthcare cover completely all those expenses. And even with all the love of this world you can't pay the debts.
At this moment, the family manage a Facebook fan page with something like 4,600 followers, where they ask for donations, inform about charity fundraising events and sell some stuffs. I need to tell you that they create a lot of events to raise money but even in the best case scenario the money raised in those events help only for a while, that’s why we think that Steemit could be a great opportunity to raise some extra money, publishing here the same content as their Facebook page.
I’m not from an NGO neither have any relationship or have any relationship with an NGO. In fact I don't know if there is any international organization which could help the family to raise money for the medical cares of a deathly disease like this one, any ideas are all welcome! (i try to contact a lot of charities with no answers at all ). Our knowledge about cryptocurrencies is very limited, but we are exploring all the known alternatives or possibilities. Also i’m trying to generate and ICO (Initial Coin Offering) only to raise funds for Facundo though the Waves interface but there’s a lot to learn before do that (Any help you could give us in this matter will be very well received).
Visit of a Physiatrist and Social Worker from Teleton Chile
If you could support Facundo with your upvote we will be very grateful, follow and resteem this post also will be excellent. So we could give a little help to the family.
I know that maybe you won’t believe or you may think that this is a scam, but i’m assure you that this is for real. All the Steem or Steem Dollars received here will help Facundo, logically first we will accumulate some Steem Power with the aim to be more visible here on Steemit.
Video from May, 2017
If you want to know them please look at the Facebook page which, as i told you the family manage, or contact us directly by email to: [email protected]
Finally, something like a month ago the mother (Carolina) and Facundo appear in the national TV here in Chile because a generalized electric power cut in Santiago (Chile) left Facundo in a critical situation because he is and electro dependan baby, look at this video to know this wonderful mother and his baby.
Fuente
Thanks to all of you,
Every upvote counts!
If you wish to make a direct donation for Facundo, you can do it here on Steemit or please use any of those wallets.
Bitcoin
1EhkqSE7CR9cyuJ9XGomFDdNzdtm1LbvM7
Ethereum
0x158d646e40B1ef6934D4eeDab2e17A31F4358a11
Litecoin
LT7gEtKZHJTF2EAcAd57e4xBuHPmYRzSZ8
Dash
XkVizNv9HcEHbCAhMBt9qukKg1tZp5fvpn
We will inform about every direct donation made, here on Steemit.
Thans to everyone for your support // Muchas Gracias a todos por su ayuda...
Soon i will post a message from Facundo and Carolina // Pronto publicaré un mensaje de agradecimiento de Facundo y Carolina.
Regards // Saludos
It is very kind of you to try and help your cousin and family. Good luck in your efforts and I wish the best for your family.
Thanks for your support!. I will do my best, to make this work!
Stay strong. I'm sure the community is willing and kind enough to help you
I really hope the community can help.
@ciag You were very humble when we chatted and you never asked me for anything, but now I understand why you were investigating different fundraising options. I'm very sorry to hear about his condition and I hope your family is able to get the treatment to help him. I will send a donation also.
@donkeypong You are right that i was looking for alternatives for this cause when i joined Steemit, but Steemit turned out to be also a fun platform too.
Since i join steemit you have been really kind answering my questions and contacting me with people. Now the only thing left for me is said thanks for your help once again, for all your support and now for your kindly donation!. Hope the best for you!.
We will keep in contact!.
Thank you very much!.
very cool to see you making good mioney on comments!
steemit wil become like a new gofundme for peope in need where we can use the blockchain to verify their condition etc, and we can get a lot of help to people using steemit as a great tool for simply charity!
beautiful family will send you 1sbd and resteem this article .God Bless and will keep baby and family in my prayers @rogerblu
I hope everything will turn out well for the little one . Resteemed and one of the bots is set. I hope it helps.
Thanks! every upvote and resteem help.
Help for a baby with Spinal Muscular Athophy Type 1
Helping The Needy Is A Definetly A Gift From God, I Wish You All The Best With This Condition :)
Thanks for the best wishes!
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STOPWelcome to Steem @faculovers I have upvoted and sent you a tip
Congratulations! This post has been upvoted from the communal account, @minnowsupport, by ciag from the Minnow Support Project. It's a witness project run by aggroed, ausbitbank, teamsteem, theprophet0, someguy123, neoxian, followbtcnews/crimsonclad, and netuoso. The goal is to help Steemit grow by supporting Minnows and creating a social network. Please find us in the Peace, Abundance, and Liberty Network (PALnet) Discord Channel. It's a completely public and open space to all members of the Steemit community who voluntarily choose to be there.