One child’s rare treatment is helping more than 20 families find a path forward

When Daphne Graskewicz-Prado first turned to GoFundMe in early 2025, she had 60 days and a clear plea: “We are running out of time.”

Her 3-year-old daughter, Harlow, had been diagnosed with TUBB4A leukodystrophy, an extremely rare and terminal neurodegenerative disease affecting just 200 children worldwide. Without intervention, the disease would slowly take everything from her.

The Prado family had already uprooted their lives, moving from Herrin, Illinois, to Temecula, California, so Harlow could access a custom treatment developed by the Carlsbad-based nonprofit n-Lorem Foundation. The treatment was made specifically for Harlow, and she would be only the second child in history to receive it.

But it came with a $120,000 price tag, and time was running out.

“I remember staring at the screen knowing people meant well when they told me the goal was impossible,” Daphne said. “They weren’t doubting Harlow. They were trying to protect me from disappointment.”

She hit publish anyway.

In less than a week, just three and a half days, strangers from across the country rallied around Harlow’s GoFundMe page and raised more than $130,000.

“Thousands of people came together around a curly-headed little girl they had never met,” Daphne says. “That was the moment I realized we were no longer carrying this alone.”

Miracle medicine

On October 15, 2025, Harlow received her first dose of treatment at Rady Children’s Hospital in San Diego, becoming the first girl in the world to receive this therapy for TUBB4A leukodystrophy.

The results have been remarkable. Now 5 years old, Harlow’s hand tremor is gone. Her speech is clearer. She’s walking faster and with more confidence. And in a moment her family will never forget, she rode a bike for the first time.

“We are seeing changes that once felt far out of reach,” Daphne says. “These changes may seem small to some, but for us they represent real progress, growing confidence, and more independence for Harlow.”

The little girl who loves music, leads dance parties in the living room, and dreams of one day being a “mommy doctor” is writing a different story than the one her diagnosis once seemed to promise.

More than a fundraiser

Daphne recently shared Harlow’s journey with the GoFundMe team, and her words captured something bigger than the money raised.

“Most people think GoFundMe is about fundraising,” she says. “And yes, it is. But for rare disease families, it becomes something much bigger. It becomes access. It becomes the bridge between a scientific breakthrough and a patient actually receiving that breakthrough.”

That bridge is now reaching other families. As Harlow’s story spread through news coverage and social media, families facing the same devastating diagnosis began finding her, and finding hope.

“When families search for TUBB4A, they find Harlow,” Daphne says. “They find a little girl living her life. They find a treatment. They find a community. Most importantly, they find hope.”

A ripple effect

More than 20 families are now in line to receive the same treatment after seeing Harlow’s progress. And GoFundMe is helping them get there.

One-year-old Eliyas and his family recently traveled from the UK to Rush University Medical Center in Chicago for evaluations connected to the same pioneering ASO treatment program. His family has launched a GoFundMe to help cover hospital costs, medical monitoring, and supportive therapies.

14-year-old Seth, who lives in West Virginia and has waited more than a decade for a treatment option, recently learned he qualifies for the same ASO infusion treatments. His family is also fundraising on GoFundMe to help make ongoing care possible. He’s expected to begin treatment this fall.

Daphne is now an advocate for both families and others facing similar diagnoses, showing how one fundraiser, and one community, can change far more than one life.

“Let’s change the world together,” she and Harlow tell each other every night.

They already are.

To support Harlow’s continued journey, visit her GoFundMe page. You can also support Eliyas and Seth by visiting their GoFundMe pages.