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Harlow and Daphne — The Kind 50

Harlow and her mother, smiling over a frosted cake.

mother of invention

When Harlow was 3, she was
diagnosed with TUBB4A
leukodystrophy, a rare,
terminal disease affecting
just 200 children worldwide.

Harlow as a toddler in a chair, smiling with a flower headband and one hand raised.

They were running out of time

The treatment cost $120,000. Her mother,
Daphne, had 60 days to raise it. She
published the fundraiser anyway. In three
and a half days, kind strangers raised more
than $133,000.

Harlow’s father, her mother in scrubs and a cap, and Harlow on her lap in a hospital room.

First in the world

On October 15, 2025, Harlow became the first girl in the world to receive this treatment.

Harlow in a red bow and a pink walker, in a hall.Save Harlow - Help Her Access Life-Saving Gene Therapy
Harlow in a colourful dress and a walker, with a nurse in teal scrubs, in a hospital hall.

Now, her tremor is gone

Her speech is clearer. She rode a bike for the
first time. And she’s five.

Daphne was fighting for one little girl. She
had no idea what else that fight would set
in motion.

Video still: a woman in a pink blazer and a bald man in a dark suit walk beside Harlow, in a red bow and a pink walker, across a ballroom, captioned “What moved me most”.

their story opened the door for 20 more

Video still: a child in a hospital bed holding up a handmade card.
A mother and her toddler by a frosted cake.
A girl in a blue dress with a pink walker.
A girl on a bed with a tray of sushi.

Once families saw Harlow’s story, they learned a treatment existed that hadn’t been possible for them before.

More than 20 have asked for it. Two have already received it.

Video still: a girl in a pink top on a pink trike, seen from behind, on a street lined with houses.

$133k+

raised for a new possibility

Do something brave for someone you love

Start a GoFundMe