Hey guys, so yeah I kinda went dark on the site. I was living in NJ, my son was diagnosed with a rare genetic disease called SMA type 1. Was told there was no treatment, no cure, that he’d be dead before 2 years old. I, of course doing more research than the damn doctors, found a potential drug in clinical trial that was open for us, but it was in Columbus, Ohio. It was gene therapy and a total risk on our part, being as gene therapy wasn’t very tested and risky. My wife and I struggled with the decision but ultimately went for it. My son, being one of the 1st to get the drug was given a low dose of the gene therapy drug and it seemed to stop the progression of the disease. He just turned 6 a few weeks ago and it’s still a challenge on many levels, as he is severely disabled from what the disease did in the time that we were waiting to get it, but he’s doing well and maintaining his strength and vitality so it’s been one hell of a crazy ride but still pushing forward. We up and moved to Columbus during the trial and decided to stay here so we’re now living here.
Where’d everyone else go? Last time I was here Yeti ran the place.
Holy moly bud. here's hoping all goes well with your wee man and he does as best as possible.
Yeti may or may not be around..lol
I assist Nibs who keeps the wheels running but stinks of hobo piss and wine vinegar.
there are still some of the old names kicking around but they don't post as much.
It's nice to have you back bud
Damn...cue the crickets... it’s so quiet here now.
Hi. Your nickname is familiar. I used to be geogaddi00 on the old ConCen years ago. I came back a year or so ago after being gone for a while as well.
As far as I know nibs runs ConCen.
how the hell are you? long time no see Silva
Hey guys, so yeah I kinda went dark on the site. I was living in NJ, my son was diagnosed with a rare genetic disease called SMA type 1. Was told there was no treatment, no cure, that he’d be dead before 2 years old. I, of course doing more research than the damn doctors, found a potential drug in clinical trial that was open for us, but it was in Columbus, Ohio. It was gene therapy and a total risk on our part, being as gene therapy wasn’t very tested and risky. My wife and I struggled with the decision but ultimately went for it. My son, being one of the 1st to get the drug was given a low dose of the gene therapy drug and it seemed to stop the progression of the disease. He just turned 6 a few weeks ago and it’s still a challenge on many levels, as he is severely disabled from what the disease did in the time that we were waiting to get it, but he’s doing well and maintaining his strength and vitality so it’s been one hell of a crazy ride but still pushing forward. We up and moved to Columbus during the trial and decided to stay here so we’re now living here.
Where’d everyone else go? Last time I was here Yeti ran the place.
Didn't know you then but I'm glad you're here.
I'll pray for your family's health. best of luck to you all.
Holy moly bud. here's hoping all goes well with your wee man and he does as best as possible.
Yeti may or may not be around..lol
I assist Nibs who keeps the wheels running but stinks of hobo piss and wine vinegar.
there are still some of the old names kicking around but they don't post as much.
It's nice to have you back bud