Clinical Dx Rare Brain Disease

Greetings! I'm JT Brumley, 32, and currently living in Cincinnati, Ohio.

I'm currently seeking funds to assist with monthly bills while I'm unable to work and in the process of applying for federal disability retirement for a clinical diagnosis of Fatal Insomnia (sFI). The only way to diagnose with certainty is a PET scan which insurance won't cover and I don't have $7000, or an autopsy. Insurance also reminds me that in the next 12-18 months it would be obvious to know for sure since at most I have 3-4 years to live.

Four years ago I slowly developed odd sleeping patterns and slight sensory issues. Initial diagnosis was fibromyalgia and likely Clinically Isolated Syndrome (CIS). During a majority of those 4 years I slowly developed new and worsening side effects correlated to my sleep deprivation. For nearly a year I was taking a prescription medication that I had to pay $1200/month for until my Neurologist got my insurance to cover the medication. Over time the medication stopped working and at this point no sleep aid, even regular amounts of  anesthesia, won't get me to sleep for longer than 15-30 minutes a night at most. I often would go about my life and work having accumulated no more than 2 hours of sleep a week. This past December things got really bad and since early April I've not been able to work due to vision issues, motor dysfunction, and dementia to list a few. These effects are also accompanied by streaks of days without sleep (up to 9 at times).

To cut back on spending I have moved in with my father and step-mother, cleared out superfluous bills but still have monthly recurring expenses in addition to medical expenses. I will need these funds to cover the months of I'm unable to work. I hope to be able to return at least part-time, but we'll see.

It's important to me to get these funds because I don't want to be a financial burden to my friends and family with medical bills and covering the expenses of moving in with them, helping me pay bills to this point, drive me to hospital, medical appointments, etc. They have given me so much these last two months of hardship and I am astonished by their generosity. I want to, at least temporarily, relieve them from some of my many burdens.

I was originally introduced to this site to raise money for a 'bucket list' trip I've wanted to do for years to go to Vancouver, BC for a few weeks, but I'd much rather try to keep some aspect of my life in order; Vancouver will always be there and I imagine sometime in the next 3 years I can get out there.

I will be extremely appreciative to any interweb friends that donate any amount. There is a lot of good in this world. Most of my good ($) has gone to kickstarter but now I will give what I can to others in need on this site. If you don't wish to contribute to my fund, please find a young child or family in special need.

Thank you everyone for your time and consideration!

Donations

  • Valerie Bopp 
    • $200 
    • 37 mos
  • Anonymous 
    • $258 
    • 37 mos
  • Anonymous 
    • $50 
    • 37 mos
  • Girrrrrrrrrrrrl ! 
    • $20 
    • 37 mos
  • Elizabeth Lasky 
    • $25 
    • 37 mos
See all

Organizer

John Thomas Brumley 
Organizer
Cincinnati, OH
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