I Have A Rare Genetic Cancer Please Help Me
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My name is Nicole Morin, I have been diagnosed with "GATA2", deficiency syndrome, which is rare dominant genetic disease. This rare condition has a broad phenotype encompassing immunodeficiency, MDS/AML, pulmonary disease, and vascular/lymphatic dysfunction to name a few.. This abnormal gene is passed down from parent to (inherited) child. In the world medical lecture, which states that less then 500 people have ever been recorded having this rare dominant genetic disease. I have received a Life Saving Bone Marrow Transplant, which has been complicated with Acute Graft Vs Host Disease (GVHD), and the Steroids (prednisone) were used to control the (GVHD). Caused a another rare aggressive disease called AVN of the Hips, which has left me in extreme pain and in a wheelchair for the rest of my time here. Only 124 GATA 2 patients have been transplanted. This disease is so aggressive patients aren't able to get the transplant in time due to succumbing to the GATA2 beacuse its so rare.
The "GATA2" deficiency syndrome has been dominating Nicole's father's side of family (offspring).My Grandmother passed away at 28, My Father passed away at 29, My Uncle passed away at 30, My Brother passed away alone at 30, My Aunt Passed away 33. Myself and my Son have been diagnosed as well as my two other cousin's which one has been transplanted also.
I am a single mother with no family at all nothing. I am alone its just me and my 15 year old son, which is autistic. So, far I have done my Bone Marrow Transplant ALONE.. no help no family no visits no calls texts anything..
I do have a home health aide who works up to 5 days a week, I fought very hard for a aide because this situation someone just can't do alone. Unfortunately, I did pass on GATA 2 onto my son who is being closely monitored at UPMC/NIH. This is very devastating news as you can imagine giving the family history (stated above). We are concerned about our dire outcome with life after Bone Marrow Transplant.
All that is donated will help go towards a manufactured home that is ADA compliant. where i can fully function on my own in a wheelchair and get some sort of independence back. I appreciate you taking the time to read our story. We greatly appreciate any amount no matter how large or small or even just a simple share you're willing to contribute. We ask for continued prayers for my son and I during this hard and difficult journey.
Thank You So Much!
Nicole Morin & La' Montae' Morin
Organizer
nicole morin
Organizer
Stowe Township, PA