Seb's "Heals on Wheels" Update

If you know me, you already know my story, and you probably know why I'm asking for your help.  

In case you don't, here's the super  condensed version: I need to raise money to pay for my health insurance and medical expenses while I wait for my appeal hearing to get onto SSDI. I have been told it could take up to 12 months, so I am looking to raise enough to cover myself for at least 10 months, which adds up to approxmiately $6000. 

If you are unfamiliar with my situation, please read on for the longer version!

When I was 8, I was diagnosed with an incredibly rare an aggressive cancer, Stage IV neuroblastoma, and given 2 weeks to live. After 18 months of experimental chemotheraphy, immunotherapy, and radiation, I went into remission, unlike 90+% of the children who were treated with me.



I am undoubtedly blessed to be here, and I do my best to approach every day with gratitude. Nevertheless, each day holds new challenges, and in the years after my treatment I have developed an ever-lengthening list of chronic after-effects, including Type 1 Diabetes, Ulcerative Colitis, Ankylosing Spondylitis, and ongoing kidney stones. I have managed to keep a positive attitude (most of the time!), largely through writing and sharing my experiences, and I have been a very vocal  advocate for pediatric cancer research.

Despite all of these conditions, I graduate from high school on time and with honors, and I attended Tufts University on a full scholarship. Although my health continued to drastically affect my studies, I graduated with a BA in English Composition in 2010. Since then I have worked a number of jobs, ranging from video editing and graphic design to working on a warehouse loading dock.





Unfortunately, over the past year, due to long-term effects of medications and changes in my conditions, I have been unable to work, and out of necessity I applied for SSDI in January.

Despite having the vigorous support of a half-dozen doctors (including the SSA's own independant evaluator), I was denied in April. I was told to expect my appeal hearing sometime in the next 8-12 months. (!!) (Believe it or not, the person who told me this thought they were delivering good news...apparently in NYC it routinely takes up to 18 months for a hearing date!)

Unfortunately for me, at this point I have already been living exclusively on credit cards since February, and the expenses do not stop. 8-12 months seems like an incomprehensibly long time to wait.

The main expense is my health insurance, which I am COBRA'ing from my previous job at approximately $400 per month. (At least for NY, this is a very good deal and offers excellent coverage.) Until July, this COBRA payment has been covered by a grant that I received from the SAMFund, which is a fabulous organization that provides financial support to young adult survivors of cancer. As of August, however, I will need to find another way to pay the bill.

Due to my total lack of income--and my inability to seek new income while my appeal processes-- this is an incredibly daunting task, but nevertheless utterly necesssary.

I have calculated that above and beyond my insurance, my medical expenses average around $200 a month. This includes copays ($40 per visit), travel, nutritional supplements, etc. 

Thus my goal is to raise $6000, as this will allow me to cover 10 months of my insurance premium plus assorted medical expenses, hopefully bridging the gap until my acceptance onto SSDI. It will not cover the debt I have accumulated up until this point, or any additional alternative or supplementary treatments; if we seem to be approaching the initial goal I will (very happily) update this page!

 

(I would like to note that I am currently applying for another grant from the SAMFund and will update here if I receive it. )