Dracut teen with rare disorder gets new ride inspired by love of buses

DRACUT, Mass. — A Dracut teen with a rare disorder has a new ride around town, thanks to his dedicated parents who were inspired by his love of buses.

Caleb Miles, 14, has Fox G1 Syndrome, a neurodevelopmental disorder caused by a gene mutation. For Caleb, the disorder causes epilepsy and behaviors on the autism spectrum.

While Caleb has loved school buses since he was a little boy, his morning seizures have prevented him from taking the bus to school with his classmates.

“He really only gets to ride a bus when he goes on field trips, and it’s just not enough for him,” Caleb’s mom, Stefani, said. “It’s not enough now. He wants to ride them all the time.”

So Stefani and her husband Shane got creative — determined to give their son the ride he had been dreaming of.

The two scraped together some money and bought a bus they now call, “Big Red,” lettering it, “Caleb’s Ride,” and spreading awareness of his disease with the website, www.foxg1research.org, on the side.

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Dracut teen with rare disorder gets new ride inspired by love of buses

“We took him that night for a test drive on the bus, and he loved it. Absolutely loved it,” Stefani said. “He’s just very calm. He talks about his bus. ‘It’s my bus.’ He talks about his bus all the time with everybody.”

New England Transit Sales in Tyngsborough lettered the bus for free for the Miles family. After the salesman told the manager about the sale and the purpose of Caleb’s special ride, the company sent a $1,000 check back to the Miles family, touched by their story.

For a few months now, Caleb has enjoyed adventures around town, riding to and from summer school, his grandmother’s house, and the grocery store.

The community of Dracut has embraced Caleb and his bus, a heartwarming reception for Shane and Stefani.

“I didn’t get the experience of most dads. You know, building that go-kart or playing baseball or those things,” Shane said, smiling proudly in the driver’s seat of their new bus. “So, if this can be my experience with him, so be it. This will be my experience with him.”

Shane and Stefani, who enjoy taking turns as their son’s chauffeur, never hesitate to stop and beep at a new friend or invite them onto the bus to meet Caleb and listen to music.

“He thinks it’s hilarious. He loves the horn honking in a car. He’s just – he’s so my son. He’s used to me honking,” Stefani joked.

Caleb’s joy makes any trace of doubt his parents felt about the bus so worth the effort.

“We kind of went through that, ‘How are we going to make this work? How do you get a bus? How do I need a special license? How do we afford it? Can we afford the gas on it?” Stefani explained. “All of these things run through your head… And we just make it work. It’s just, where there’s a will, there’s a way.”

Stefani and Shane have big plans for the bus, hoping to convert it into a small RV they can take on longer trips to show Caleb the world.

“Your road – it can become very, very small,” Stefani said of families of children with special needs. “When you’re in a situation like this, you can do something to make it bigger. And we’re very much the people who would rather do something to make it bigger… We want him to start getting comfortable outside of the house, and not just in our little community, but in the world. You know, to see things.”

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