About

My name is Ashley. I have a GATA2 mutation. There’s a mutant among us and this is our story.

GATA2GATA2 illustration by Jacqlyn Vetter

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6 thoughts on “About

  1. hi sweetie pie! omg…i think of you constantly. your mom sent me this link to your blog so i can follow your progress….i am impressed by your uplifting attitude in the midst of this…challenge. your humor prevails. so happy you let us know that the arrow (green marks) on your abdomen were photoshopped in and not actually a result of these tests or injections…or whatever the correct term is…(the reason i am AN ARTIST AND NOT A DOCTOR)…sending you endless hugs and more love that you can imagine, cutie…you are amazing ….

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  2. ok. so i just left my first comment here, and i see that the icon next to my name is PURPLE, which happens to be my favorite color…that must be a good sign….had to share… : )

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  3. Hi Honey! Jackie just shared this link with me and I am very happy to be able to learn more about your milady and life experiences coping with it. I know you are strong enough to kick this thing’s ass, and positive enough to do it with humor and grace. These attributes along with your enormously loving heart will help you through this!
    I love you like a daughter and an holding you close in my heart and admire your courage. Thank you for sharing your journey.
    Now I just have to try and find the first post so I can start at the beginning! I can already see that your lively writing skills will help me read through what must be scary situations for you. As always I am very impressed with you, dear Ashley, and sending tons of love and positive thoughts your way!! Big hugs!! Love, Jana

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  4. Ashley!! Diana from the CSULB Foundation (that works with Mary Ann) sent me a link to your blog. I did know all this was going on! (I guess I’ve been living under a giant rock), but at the same time expect nothing less of you then to have a completely positive outlook no matter what is going on, I remember you always being that way. Sending you positive vibes and hugs (maybe i’m writing this and you don’t even remember me, haha!) … anyway, I’m one of your official blog followers now 🙂

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  5. Hi Ashley,

    At the end of June 2016 I was finally given an official diagnosis for my condition, and they called it MonoMAC syndrome with a GATA2 mutation. First reaction, “Yay I finally have a diagnosis! Now I can get treatment!” Following reaction, “What the flying fornication is MonoMAC syndrome with a GATA2 mutation?”
    When I spoke with my case manager at the NIH yesterday (August 5th) she mentioned your story and that you had a blog. I am very thankful that I am not the only one dealing with this bizarre mutation, and that you have been brave enough to tell us what it’s like to have it and go through treatment.
    I see the NIH doctors in September to start my own road to recovery, and I’m glad i can take your advice with me.

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