Known for her fierce personality, quick wit, and intelligence, Harlow embraces life with a passion that is truly inspiring. She adores her siblings — her little sister Hope and big brother Henry — and has a special love for all things pink. A true nature lover, she thrives outdoors, cherishing beach days and having a soft spot for animals. With her trusty posterior walker, she dances through life, refusing to let anything dim her sparkle. 

Harlow’s journey to diagnosis began when she hadn’t started walking independently by 18 months, prompting her family’s quest for answers. An MRI revealed less than normal white matter for her age, leading to genetic testing that confirmed the TUBB4A diagnosis. Although her doctor could provide little information about this rare condition, he offered a glimmer of hope: the n-Lorem Foundation had recently visited and presented at Vanderbilt University, and he believed Harlow might qualify as a potential n-Lorem patient.  A little over six months post diagnosis, her program was accepted by n-Lorem.  

To know Harlow is to feel her warmth envelop you. Her heartfelt hugs serve as a reminder of the pure goodness in the world, even amid adversity. While TUBB4A leukodystrophy presents daunting challenges, Harlow’s family is committed to cherishing every moment with her, raising awareness, and finding hope in their journey together. Harlow’s spirit is unbreakable, and her story is one of love, resilience, and joy. 

Every night, Harlow shares a special mantra with her mother: “Let’s Change the World Together.” With the support of n-Lorem and her unwavering spirit, Harlow plans to make a lasting impact as a beacon of hope, proving that even in the face of challenges, love and determination can light the way.