About Me

I started this blog at 29 years old, as a new mom plunged into the world of rare disease after my son, Jacob, was diagnosed with citrullinemia. This blog covers the first year or so of Jacob’s life and the experience that we had.

Living with citrullinemia and other Urea Cycle Disorders is different for everyone. This is about Jacob’s journey, and it’s my perspective. Your story is likely different. But maybe reading this can give you encouragement.

Our lives have changed dramatically in the years since Jacob was born. But what hasn’t changed is our commitment to fighting this disease and giving Jacob a happy, healthy life unhindered by his ASS1 gene.

Feel free to reach out to me any time at dominique.craft@gmail.com with questions or just to chat.

4 thoughts on “About Me

  1. Dominique,

    The four of us took a trip down to Sarasota last weekend, where we saw Barbara O., Seth, and Christina. C was kind enough to share your blog with me, and I’ve spent the past half hour or so smiling at Jacob’s videos and photos, reading your beautiful prose, and responding to your feelings of overwhelming joy and fear.

    Jacob is beautiful. He’s a fabulous storyteller, too — such a sweet, expressive voice. He looks SO MUCH like you!

    Your post on Jonah and the whale especially resounded with me; if there’s one thing I’ve learned in the past 11 years, it’s that life is not linear. I’ve come to expect sharp angles and complete shifts in direction. Yes, these surprises are what make life beautiful and interesting — but sometimes I just wish I could climb in a cave and hide! I guess that’s a part of being a parent, eh?

    Just wanted to reach out and let you know I’m thinking of you three. Looks like you’ve been surrounded with love and support. Please know that you have friends in Thomasville, too — and we’re sending our best wishes your way.

    Sending love,
    Nadia

    Like

  2. Dominique,

    The four of us took a trip down to Sarasota last weekend, where we saw Barbara O., Seth, and Christina. C was kind enough to share your blog with me, and I’ve spent the past half hour or so smiling at Jacob’s videos and photos, reading your beautiful prose, and responding to your feelings of overwhelming joy and fear.

    Jacob is beautiful. He’s a fabulous storyteller, too — such a sweet, expressive voice. He looks SO MUCH like you!

    Your post on Jonah and the whale especially resounded with me; if there’s one thing I’ve learned in the past 11 years, it’s that life is not linear. I’ve come to expect sharp angles and complete shifts in direction. Yes, these surprises are what make life beautiful and interesting — but sometimes I just wish I could climb in a cave and hide! I guess that’s a part of being a parent, eh?

    Just wanted to reach out and let you know I’m thinking of you three. Looks like you’ve been surrounded with love and support. Please know that you have friends in Thomasville, too — and we’re sending our best wishes your way.

    Sending love,
    Nadia

    Like

    • Nadia, I don’t know if you remember, but you once told me how grateful you were that you were chosen to care for and support your special boys. That for whatever reason God must have considered you up to the challenge. I understand now. Thank you for this beautiful note. Love to you and your family. Hope to see you someday soon!

      Like

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