Share your Story: Ashley Davis (Whitney Dafoe)

Posted in: Community Posts, Share Your Story


Name: Whitney Dafoe

Missing Since: 2006

Location: Palo Alto, CA

Written by: Ashley Davis, Whitney’s Sister


“As a girl growing up, dreaming of your perfect wedding with your friends, you think flowers, and tulle, and candlelight.

As an adult all you try to do when planning that wedding is try to get it as close to that childhood dream as possible.

So when I got engaged, the first person I wanted to call was my best friend. The person that had dreamt up images with me of flowing grassy fields, hot pink shoes, and dancing down the aisle. When the realization hit me that I could not call him, I could not talk to him, I could not even tell him I was getting married, a sense of deep loss and heartbreak flooded over me.

My brother, Whitney Dafoe, has been sick with CFS for close to ten years, gradually getting worse day by day, hanging on to his life with the strongest sense of hope I have ever seen in a human being.

Note from Whitney, courtesy of Ashley Davis: “You have no idea how much it warms my heart to hear about Theo treating Ash well.”

It took 6 months for Whitney to have a good enough day that my mom could write him a small note telling him I was engaged. He held the card to his heart and cried for hours. I knew the tears were of happiness that I had found my person, and of loss that he could not be there with me by my side.

What Whitney doesn’t know is that he is my person, my best friend, my other half. He is the person that I shared my hopes and dreams with, and every struggle along the way. He gave me the strength to keep powering through life even when it felt impossible.

So to not have Whitney there, with me, my fiance on one side, and him on the other, is an indescribable loss.

CFS has taken everything from me. It has taken my brother, my biggest role model, my best friend, the most magical human being I have ever met.

He will not be with me on my wedding day to see me in my flowing white dress, he will not hug me and cry for joy, he will not even know that it is my wedding day. In trying to find the joy of the occasion it is often difficult to not get lost in the heartbreak of his absence.”

5 Comments for : Share your Story: Ashley Davis (Whitney Dafoe)
    • Marilee
    • July 26, 2016

    Beautifully written…such a tribute!

    • sarah
    • July 26, 2016

    in regards to”CFS has taken everything from me.”….while i understand that everything is relative, & it is a matter of perception/perspective & that entire families are profoundly impacted, i recognize that this is ashley’s her truth, however, as a very severe patient myself i can be quite certain that the one who has truly lost everything to the vile illness is her brother whitney. beautifully written & heartfelt account, regardless.

      • Janet Dafoe
      • August 1, 2016

      Don’t worry, Ashley and our family are very aware that Whitney and other severe ME/CFS patients have lost almost everything. I think, however, that if you focus on that sentence in Ashley’s statement and analyze whether it’s literally true, you’ve kind of missed the point. But I guess you didn’t because of your last sentence. Please know that it’s pretty hard for us to be putting our private lives and emotions out in the world like this, and it feels pretty vulnerable. We do it for only one reason: to raise awareness and try to get funding for this horrendous disease. We sincerely hope that everyone will feel better and we will be able to find treatments. In the meantime, let’s all be kind and generous and loving to each other. We are all suffering in our own ways, all of which are difficult and heart-rending.

  1. ME (CFS) steals everything from the individual. It also steals the individual from everyone close to them.

    The devastation of this illness is cast wide – but not wide enough it seems for the public to become outraged that patients and their loved ones are abandoned to this horror.

    Ashley, you have beautifully expressed the abject loss and grief of having a loved one taken from you in this way. It is a difficult thing to share something so personal with the world.

    Thank you for helping to expose the truth of severe ME. xxx

    • Angelique
    • August 10, 2016

    Dear Ashley,
    I feel sorry for you that you have had to face all of the sad things, because getting married has to be one of the nicest and luckiest days of your life.
    For you it is like balancing on your weddingday. Your brother could not be there because of the state of his illness and at the other side there is the man who will spend the rest of his life with you.
    I hope that the strong brother-sister-bond, that you have with Whitney, gave you that kind of feeling that if he was actually there as your best man.
    I wish you and your husband a future filled with mirracles, happiness and sparkling love.

    Lots of love
    Angelique van Braak-van Remundt

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