Sarah Wilkes' Medical Fund

I was finally diagnosed recently with a ultra-rare bone marrow failure disorder. My blood doctor has determined that I have acquired at least two bone marrow mutations. Because of these my bone marrow is making deformed blood cells as well as not enough blood cells. My current diagnosis is that I have Paroxysmal Nocturnal Hemoglobinuria (PNH). Because of the two mutations, I likely also have some amount of either mild Aplastic Anemia or Myelodysplastic Syndrome that will likely worsen over time into a full-blown case. Both of these diseases often overlap with PNH. You can read about PNH here: John Hopskins website

My hematologist says based on previous tests, I’ve had PNH since before 2009 and I may not have early lupus at all. We’ll see. But we know for sure now that it’s not my lupus medicine that made my blood counts chronically low - making me so fatigued that 2012-2016 I couldn’t work. I continue on the high-dose vitamins that made it so I could get back to work at the end of 2016, but they are no longer enough to make up for my bone marrow problem...as manifest by the fact that I came down with a case of mono so severe this summer that it Ianded me in the hospital plus made me miss 5-6 weeks of work.

The only cure for my bone marrow failure disorder is a bone marrow transplant. I am not sick enough to need it yet. But I am starting a treatment in a few weeks where I will receive the world’s most expensive drug via IV one afternoon every other week for the rest of my life...or until I need a transplant. The treatment has side effects, including the risk for certain life-threatening infections. We'll see how well I'm able to tolerate it. I plan to keep working as long as I can. Without the treatment the chance of death increases 10% per year (60% chance within 6 years). Death is usually sudden and due to blood clot to the brain or a vital organ, or due to infection due to the failing bone marrow. These can still happen on the treatment, but chances of death are lower. Though bone marrow transplant is the only cure, chances of surviving one is not great for people my age and older, thus the reason they don't just do one outright.

I am struggling financially to pay the minimum required on debts incurred from times I couldn’t work and from my time in the hospital. I am paying on them monthly and I have negotiated monthly payment plans on them and on my student loans as low as they’ll accept, but together they’re still higher than I can afford. As of a couple weeks ago the hospital is threatening legal action. I am starting this fund account to get my balance to zero or low enough that I can afford the hospital's payment plan so they don't sell my debt to a collector or bank that will charge interest rates that will make my financial situation even worse.

I’ve been putting this off for a couple weeks, knowing that I might need help, trying to manage this on my own. I hate the feeling that I have somehow not been "careful" financially. I know I have, but my savings after being too sick to work 2012-2016 was non-existant. I have insurance thru my employer but my monthly payments are quite high, as is my yearly medical max-share costs ($3500). I wish medical care was more affordable in the U.S. but that is something everyone here struggles with, as is our crippling student loan debts. Many people don’t have anything to spare, but if you do, would you consider donating to my medical fund?
  • Mindy Lilyquist 
    • $40 
    • 42 mos
  • Bernadette Lo Pinto-Neil 
    • $25 
    • 43 mos
  • Kevin Zayed 
    • $10 
    • 44 mos
  • Joshua Schnable 
    • $100 
    • 44 mos
  • Anonymous 
    • $15 
    • 44 mos
See all

Organizer

Sarah Wilkes 
Organizer
Kansas City, MO
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