
Help Luke Afford Life-Saving Treatment for Severe Condition
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Hi! My name is Luke. I am a disabled Harvard student from Dallas with no family or home and an exceedingly rare, severe condition: GABA-type idiopathic hypersomnia. It costs $700 a month to treat this profound disability. When I was 19 years old wrapping up my first year at Baylor, I began experiencing what turned out to be a Valium-like substance in my cerebrospinal fluid. My body has been creating it for itself 24/7 ever since. This endogenic substance acts on the GABA-A endozepine receptor complex like barbiturates (medically induced comas) or benzodiazepines (Xanax, Ambien)—by acting as a positive allosteric modulator on GABA receptors. GABA is the brain’s off switch—to slow, turn off, to block brain signals—and modulation is *magnifying the effects of* [GABA]. Ever had sedation to undergo an outpatient colonoscopy sedation or mild surgery? Have you taken a bar of Xanax? If so you'll remember feeling zooted, in a trance, you might have passed out for 16 hours, you might remember nothing at all. This is what I’ve been battling every second of my life since I was a teenager: nine years ago. I slept 19-20 hours a day for many years with this severe GABA-related condition falling within idiopathic hypersomnia umbrella. Was in a seven-year near coma until we finished medical journey in fall of 2023. Did it while homeless, broke, in $30k of medical debt, having been stripped of insurance, homes, car, belongings, and far more. What happened then? My dad did the best thing he ever did in 9 years: committed federal medical abuse and disability fraud as an oil & gas CEO alcoholic narcissist on his severely disabled bankrupted homeless Harvard prodigy son. He got my life-saving treatment Flumazenil—a competitive antagonist that gets rid of positive allosteric modulator by changing shape of protein and thus neutralizing binding sites (it'd have no effect if y’all took)—under his name, used it to control me, then took it away six days later: after another trip on the private jet. I haven't seen him since. And that’s ok. But as such, I’ve had to fight each month since indeed to simply 'not be in a coma' for another 4 weeks. Had a plan as always for this semester—yet as usual it was vaporized by abuse from my other parental unit—and long story short it sank $2,500 of $6.5k in loan on stuff I'd already had that—in fleeing a scary Jan 17th situation—lost. Even now I have one pair of shoes, no belt, one jacket, no rain jacket, no hoodies, I'm starving daily, and so on. I need your help: all will go to Fluma, rent, and savings therein: $494 a month for Fluma lozenges, $180 for the cream. Alas, I'm days from losing my housing with countless people who greatly rely on me. I'm president of Citizens' Climate Lobby Harvard. I am gay and the vice caucus chair of College Democrats of America Stonewall. I have a boyfriend and friends I love. For more: check my Instagram. Thank you! -Luke

Organizer
Luke Barnett
Organizer
Cambridge, MA