WHEN CASEY MCPHERSON became a father, his purpose became clear. He needed to raise his daughter, Rose, to be loving, courageous, healthy and strong. He needed to protect her.
So when the pediatric neurologist told McPherson that Rose had a rare genetic disease—so uncommon that it didn’t even have a name—parental instinct kicked in. And when the doctor said: “There’s nothing we can do,” that instinct sharpened.
“Rose was being attacked, but there wasn’t a monster for me to kill or a car for me to throw myself in front of,” McPherson told Newsweek. “It was just one little nucleotide in the gene. And if that’s the monster for me to kill, then that’s the monster I’m going after.”
Rose, now 9, and McPherson, 46, fight against that “monster” disease…