It is deeply humbling for us to reach out and ask for financial help. And I feel honored that people are choosing to be so giving. To me, that includes the invaluable gifts of prayers, time, love, and support.
This go fund me account would solely provide financial means for medical care for Tamara (Tami) Daugherty Pineda (BHS 1990). Currently, my husband, Dave (Allendale Columbia 1990) and I are seeking out of state treatment options. It is not clear yet what facility will be the best match for my care (Mayo, Cleveland, John Hopkins, or an independent center). But what is clear is that it is going to take us a significant amount of money to provide for travel and medical expenses. We are blessed with health insurance and it hopefully will off-set many costs, but because my conditions are so rare, I have already been rejected (even retro actively!) from receiving medications that demonstrated significant improvement in my health because they were considered “off-label.” But when you battle rare diseases, everything is off-label because the drug companies see no benefit in studying said groups! Ideally, my body would benefit from a stem cell transplant and that is are “miracle lying in wait.”
As for a brief summary of my medical needs/conditions: At 30, my body started to attack itself and each year following, I would be diagnosed with a new condition: migraines, severe asthma, colitis, Reynaud’s, fibromyalgia, degenerative arthritis, cystiytis, … there were concerns (and are still) that it started with one tiny tick bite (Lyme). I went from a weekend ADK backpacker to someone who had trouble walking up 5 stairs. Then, at 34, I was diagnosed with Relapsing Polychondritis (a rare autoimmune disease similar to Lupus), and I was in Boston being evaluated when I fell gravely ill with a ruptured colon. A colon that had been ruptured for 2 weeks… causing sepsis throughout my entire body. They gave me a 10% chance of living through the night. Over the next 5 years, I spent hundreds of days in the hospital and underwent 7 major abdominal surgeries (I also had various ostomies and my small bowel ruptured along the way, too). In the last 4 years, my body has attacked more organs (my heart, causing two heart failures, and my gall bladder requiring emergency surgery) as well as my joints, resulting in two emergency back surgeries. And in the last couple months, it is now attacking my myelin sheath causing partial blindness and paralysis in my legs and arms (most likely the beginning stages of MS).
So here I am, in a great medical community, and am a complete mystery to the medical field. But there are facilities out there that can help. I just need to figure out how to get there. Which is where this fund campaign comes in.
I want you all to know, that just having you share in a piece of my story is truly gift enough. I have made it this far through the web of connective support from those I know and those who just care. Each of you have been and are integral to my well being. Each of us is a spark of divine light… and your collective light is a Beacon of Hope for my soul. I fell blessed and truly grateful for any small way you feel comfortable helping. Thank you.
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- William Glasner
- John Volpel
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