Frankie and Jess

Frankie and Jess

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Please read this about my amazing friend and her daughter, Willow. -Jess

Please read this about my amazing friend and her sweet daughter, Willow.


About Willow and Her Family

Willow Alexis Hemsley came into the world on December 27, 2016. At 6 pounds, 11 ounces, Willow was every inch the perfect baby. As she grew, her big blue eyes took in the world around her with excitement. At six months old, Willow was a bright and happy child. She loved trips to the pool and had toes that were almost always pointed. So much so that her mother, Krystal, began calling her “my tiny dancer.” 

After a few months, when there should have been the start of a lot of firsts for Willow—first steps, first words, first tumbles, and first crawls—things began to change. By the summer of 2018, Willow still couldn’t take her first steps, and her physical progression seemed to be coming to a halt. At first, the doctors were convinced that Willow was just a “late bloomer,” and that she would soon catch up to others her age. But Willow was not a late bloomer—and her family knew it. Something was wrong with their daughter. 

When her family pushed for second opinions and better observations, Willows new pediatrician referred them to a neurologist, from there the testing began. Doctors began running tests and ruling out conditions such as hip dysplasia, muscular dystrophy, and Rhett syndrome. Meanwhile, Willow continued to regress. She went from a happy, active toddler to a quiet child. She became a child who struggled to bear her own weight and was losing the strength to feed herself—but not the strength to love or see the joy in the world. 

While doctors continued to fight to find out what was wrong, Willow continued to discover her world. A world that was full of horses, Elmo, oatmeal, and Happy Meals. She learned to string two words together to express her emotions. When her family would ask how she was doing, Willow would reply, “Happy day.” 

After two years of extensive testing Willow finally received her diagnosis in April of 2020, Niemann-Pick Type C. NPC is a rare progressive genetic disorder characterized by an inability of the body to transport cholesterol and other fatty substances inside of cells. This leads to the abnormal accumulation of these substances within various tissues of the body, including the brain. The accumulation of these substances damages the affected areas and causes the cells to die.

Willow’s biggest strength is that “she stays happy all the time. It doesn’t matter to her that she’s regressing. She has amazing resilience, and her attitude towards life is amazing.” Our family attended our first NNPDF conference in July (virtually of course) and is currently in the process of investigating clinical trials in hopes of extending Willow’s life expectancy while not compromising her quality of life.

Photo: Getty Images

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