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YOU WON'T BELIEVE IT (BUT IT'S TRUE): One family's journey into a rare genetic disease.
BEING ONE IN A MILLION. BEING RARE. BEING UNIQUE IS NOT ALWAYS A GOOD THING.
If you have ever heard of a mother's "intuition" and didn't believe it to be true, this story may change your mind. As a mother of two, these accounts of our children's lives and diagnoses are too rare and unusual to be fiction. I'm just not that creative a writer. Frankly, I'm not an author at all and writing a book has never been on my radar or bucket list.
I'm just a mom who needs to tell her story for herself, and maybe for some other parent who has a "sinking" feeling that something isn't right. I want to give that parent encouragement to keep seeking out answers. To keep fighting the fight. To become the advocate that only that parent can be for their child regardless of that child's age. To not be afraid of the medical community - they don't know everything, and in their defense, they can't do what they don't know. To become a teacher for their doctors, so that their doctors can best treat their child. It's exhausting, but it must be done. It can be done.
WHAT ALTERNATIVE IS THERE?
If you have ever heard of a mother's "intuition" and didn't believe it to be true, this story may change your mind. As a mother of two, these accounts of our children's lives and diagnoses are too rare and unusual to be fiction. I'm just not that creative a writer. Frankly, I'm not an author at all and writing a book has never been on my radar or bucket list.
I'm just a mom who needs to tell her story for herself, and maybe for some other parent who has a "sinking" feeling that something isn't right. I want to give that parent encouragement to keep seeking out answers. To keep fighting the fight. To become the advocate that only that parent can be for their child regardless of that child's age. To not be afraid of the medical community - they don't know everything, and in their defense, they can't do what they don't know. To become a teacher for their doctors, so that their doctors can best treat their child. It's exhausting, but it must be done. It can be done.
WHAT ALTERNATIVE IS THERE?
136 pages, Paperback
Published January 28, 2023
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February 5, 2023
Heartwarming, and often, heartbreaking story from a mother, living every parent's nightmare. The insights into their son's (and sons) rare disease, how she and the family navigate the endless journeys of doctors, hospitals, specialists, while advocating for their children and attempting to live a "normal" life. A quick, endearing read- light on the medical terms- but enough to allow the reader to understand the disease, with just a touch of humor. Brad is a warrior- "Choose To Live in a Dream".
Displaying 1 - 1 of 1 review