Help Deja Fight Rare Brain Cancer

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139 donors
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$10,221 raised of $10K

Help Deja Fight Rare Brain Cancer

How do I start? When I turned 25 this year on April 1st, I was ready to start the rest of my life. However, right after my birthday, I developed what I thought was just an ear infection that would not go away, no matter what my doctors did. Two weeks after my 25th birthday, I was diagnosed with a brain tumor. My type of tumor, called a hemangiopericytoma, is a very rare type of tumor that affects roughly 0.060 per 100,000 people. My doctors wanted to remove my tumor as soon as possible due to its size, which was about the size of a baseball, and it's affect on my vision, optic nerve, nerves in my ear, and overall brain function.


Unfortunately, the surgery was postponed three times due to my battle with Covid-19. In the last two months before my surgery, I tested positive for Covid-19. I was in and out of the hospital for weeks with complications until I finally developed Covid related pneumonia. I wasn't able to get surgery until after I recovered from the pneumonia. Thankfully I recovered from the Covid with no more complications or lasting effects. I was finally able to get my brain surgery which was also a success. After a week in the hospital, I was discharged and sent home to finish my recovery. But my fight is not over yet.


After long talks with my doctors, they informed me that the type of tumor I have is cancerous and will eventually come back. Because it is so rare, my best treatment options are limited. My only in state option is photon radiation which could potentially cause permanent hair, vision, and hearing loss as well as possible brain damage. This type of treatment also has the potential to give me another tumor due to the intensity of radiation I would receive.


There is however, an out of state treatment that could significantly minimize all these terrible side effects, possibly get rid of this tumor all together, and ultimately save my life. This treatment is called proton therapy and is only available in a handful of hospitals on the east coast.


I am starting this go fund me because there is a location in New York that I hope to be able to receive proton treatment at. I would need to pay to relocate to New York for at least 6 weeks to receive treatments Monday through Friday as well as pay for the treatment itself and maintain my housing here in Connecticut. I am asking for any amount of donation as I have been out of work since April and will probably still be out of work until the end of the year. My treatment could start as soon as August so I need to act fact to arrange everything. If you cannot donate I completely understand, I know how hard the pandemic has been on everyone. If you cannot donate I ask that you please share this!


I want to also thank our families and friends who have reached out and supported myself and my fiance since this all started. This journey has been a hard one and with your kindness and support, you have made this difficult time truly better!

Organizer

Deja Sebastian
Organizer
Groton, CT
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