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: faculovers.steemit@gmail.com
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.
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.
