Bone Marrow Transplant Financing

Dear Friends and Strangers,

My name is Nina. I was born and raised in Belarus. I have been living in NYC since 2000, although I have no family here. For most of this time, I have worked as a Paralegal, most recently at Johnson & Johnson.

But I have come to point in my life where I can no longer work and support myself due to a rare gene mutation. I must rely on the kindness and generosity of people like you to help me pay for treatment to stay alive.

I have been diagnosed with "bone marrow failure" due to a rare Pathogenic Gene mutation in RTEL1 at c.3791 G>A (R1264H). It turns out that this Pathogenic Gene mutation is the cause of a host of mysterious symptoms that I have been suffering for years without proper diagnosis: immunodeficiency, chronic fatigue syndrome, and multiple neurological and autoimmune conditions. To put it into laymen's terms, I have no functioning immune system. I have about a 40% chance of developing leukemia at any given moment. My only chance at life without being bedridden and rotting from constant infections and viruses is getting a new immune system - a bone marrow transplant. Sloan Kettering has told me that my insurance will cover 80% of the costs, which they estimate to be around $800,000.

About 70% of my time time is spent absolutely bedridden, in an almost comatose state. RTEL1 is a DNA helical required for proper telomere replication and stability. My DNA sequence gets shorter every year, that is why I am feeling worse and worse and the expectation is that without treatment, I will eventually die. If I get a new transplant, I might be able to return to work, live a full life, and give back to everyone who has helped me live. I am turning 44 on May 17th ... I still can have a long life, if given the chance.

Also, please do register at Be the Match, a non-profit registry for bone barrow and cell donors.

I will keep you updated on any developments.

Thank you for the bottom of my heart. I know it's hard for everyone today, so your help will mean life to me and my parents (who unfortunately, stuck in totalitarian Belarus, and are unable to help me.)

With Love and Hope,

Nina

347-526-3300

Update 9/16/23. I am being monitored by Dr. Sergio Giralt every month for acute leukemia and bone marrow status. He is okay to the transplant but I need 24h care for the first 6 months, my insurance doesn't cover that. My mother too sick to travel. Also, if my donor is not a blood relative, I have 60% chance of surviving the surgery.

On 9/5/23 I have PET scan of the brain due to my steep cognitive decline and neurological symptoms. There are significant changes in my brain they think due to an Autoimmune Encephalitis. I am trying to advocate for myself and find a Autoimmune Encephalitis specialist neurological to confirm or rule out the diagnosis. If this has anything to do with my mutation, nobody knows.

I get complete body paralysis for hours at a time, I am barely verbal, severe headaches.

Please help me!