Family embarking on epic road trip to raise money, awareness of daughter’s rare disease

By Ari Hait

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    STUART, Florida (WPBF) — A Treasure Coast family is soon embarking on an epic road trip, traveling across the country to raise awareness of a rare disease.

Emilia Turner was only 4 months old when a doctor suggested she may suffer from a disease called Neurofibromatosis Type 1, more commonly known as NF1.

“It was a completely out-of-body experience, just absolutely overtaken with worry,” said Sarah Turner, Emilia’s mother.

“First of all, we didn’t know anything about what that was or what that meant,” said Robbie Turner, Emilia’s father. “So, the first thing we’re doing is we’re doing our own research about it.”

And they learned NF1 can show up in various ways, most commonly with tumors on nerve tissue.

Emilia was only 2 years old when doctors found a tumor in her brain.

She underwent chemotherapy for more than a year to control the tumor’s growth.

Things have stabilized now, but the Turners know another tumor can appear at any time.

So, they sold their home in Jupiter and bought an RV which they will use to drive around the country for the next two years, visiting every state in the continental U.S. to spread awareness about NF1.

“I have wild ideas,” Sarah said about what the family is calling “Our Big NF Adventure.”

The Turners have mapped out most of the trip, making sure to include every national park.

Emilia will see snow for the first time.

Robbie plans to run a race in all 48 states.

Robbie and Sarah will work remotely while also homeschooling Emilia.

“It’s the coolest home school that you can possibly do!” Emilia said.

And at every stop along the way, they will talk to anyone and everyone and spread awareness of NF1.

“You can’t fix anything until you know what it is,” Sarah said. “So, the more people that people know, that have even heard of it, brings us closer to a cure.”

The Turners begin their trip from Stuart on Monday.

The Turners have created a website to raise money for research and allow people to follow along on their journey.

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