ALS Dan Toch
Garmt is experiencing ALS – so you don’t have to!
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Gaion is my 5-year old nephew from New Zealand. I'm sorry folks, it's not like I'm making these names up. "Gaion and Metis and Garmt go on a great wild adventure" sounds like "can I buy a vowel please". And as REM is as appropriate for the lad in the former post, Eels figures perfectly with this one, or at least the particular song Saturday Morning does – other than that he's more a "Metallica plays Shiny Happy People"-type of kid. I have yet to meet the stoic that can keep his cool in the vincinity of this tight-bundled ball of red-headed excitement. People say he's just like me but that's not true, he's such a pleasure to be around. Meeting a tiny version of yourself with Tompkins genes in the mix wasn't the horror I expected it to be at all and it's not like his level of activity is rubbing off on me at all, not at all no, he's just got me going at 1200 words per minute right now so if you can't make sense of what the hell is going on, all I can say is, join the club. That's what he does to you – turns your world inside out. Just 6 hours ago I was reading him a bedtime story. Go on, try to guess, what does a 5-year old kid wants to be read as a bedtime story? Wrong. Wrong. No. Wrong again. Stop guessing. It's Iris' brain poster. As he lies there on the mattress all snuggled up with his knuffel I read out the name of each and every cerebral artery and nerve and only when I'm completely and 100% done is he content to close his eyes and doze off in less than an instant. Now it's 04.15h and he kicks open the door and wrestles his way into our bed (this guy is the most aggressive sleeper I've ever seen) and then announces three hours later (which he spent blissfully sleeping while kicking Iris and me in the kidneys) that he's got exactly three aunts and it's time to start eating, now please. We make a kiwi milkshake and a banana milkshake for breakfast (which, when shaken properly, by the muscles of this guy, end up evenly covering the floor, kitchen, ceiling and walls – perfect!) and when we combine them they are hailed to be SUPER LEKKER! with more enthusiasm than I've ever had the energy for myself. We've produced about a gallon of milkshake of which after the beforementioned shaking about half is available for consumption. I see this guy, about a third of my size, prove science wrong, when he swallows down TWICE as much milkshake as me. We burp and look at each other and see the day spread out in front of us, more clean and fresh and open and peaceful than I've seen a day in a long time, and I ask him: what shall we do today, Gaion? Everything seems possible and every answer is perfect, in fact, this whole sleepover is just that.
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Hello, dear reader. ALS is currently incurable, but I’ll be fucked if I’m taking this lying down. I’m also trying to be realistic about this, but still, a bit of a battle does a person good every now and then. The fight I’m fighting is summed up pretty neatly here in this video (februari 2014).
There are a few ways you can help out with a small donation:
Henrik has joined the ride to defeat ALS. You can help out by sponsoring him.
The biggest genome research project known to date. My biggest bet that we’ll find the cause. Once that is known, we at least know what we’re shooting for.
Of course, the big constant factor is the Dutch Stichting ALS; they welcome your annual donation; small or big.
Are you participating in a something, or do you know a good cause? Mail Garmt on [xyz-ihs snippet=”mailto”] or use the contact form.
My friend who’s really on top of the fight is Bernardus Muller and you can find him on https://twitter.com/BernardusMuller. His twitter feed is the best place to hear what’s going on with ALS. If anything can be done or if we or someone else have managed to achieve something, you’ll hear about it from him first.
Fill it out and just press send.