This is my girlfriend and her son Rodrigo. He's 5 years old and in 2018 he was diagnosed with Duchenne Muscular Dystrophy. A condition that'll limit his physical abilities exponentially as he grows possibly leaving him bed ridden by his teenage years with a life expectancy of reaching his early 20s at best. Although this condition has no cure, just the process of getting diagnosed can literally cripple a family, since we've had to travel and perform countless test in order to figure out what was wrong.
In 2020 we had a glimmer of hope as he was chosen for a once in a lifetime opportunity to participate in a clinical trial that is trying to find the cure for this via gene therapy. The problem is we live in Dominican Republic, where minimum wage is about 200 dollars a month and an office job salary is about 600-800 a month, and the clinical trial is in New York one of the most expensive cities in the world. While we were blessed to have pretty good jobs in the context of our country, we literally had to spend all of our savings and sell pretty much everything we had on top of crowdfunding, in order to move to NY in 2020. I stayed behind to keep my job in DR since none of us could work in the US.
Due to the pandemic the trial kept on getting delayed indefinitely and my girlfriend and son had to comeback to DR in March 2021, since they had no exemption on their visas if there was no trial. By that time I had been let go from my job as well and was only working as a freelancer. So we were way worse than before, we'd basically lost everything we had in DR, had to let go of everything in NY, and nothing to hope for regarding Rodrigo's health.
About three months ago we got an email back from the Presbyterian Hospital in NYC telling us the trial was back on track for fall 2021. We had to test Rodrigo once again for to make sure he was qualified to participate and everything seems good to go. The problem is this time we have to be there for at least 3-5 years to complete the whole process.
We've already spent everything we have and we need all the help we can get to make this possible. My girlfriend's parents recently sold the childhood home in order to help and we're asking 50k to cover expenses of flights, moving, lease, and just day to day stuff and stretch that out as long as we can since she won't be able to work while the trial is happening, and I can only work in DR and travel back and forth to see them.
We are taking donations via this platform, since Gofundme was having trouble with our Dominican donations. Anything you can do to help will be greatly appreciated.
Mod Edit. Link Removed.
If anyone has any info that can also be useful, or is going through a something similar please share.
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