Minnesota family to take one last road trip with son living with myotonic dystrophy
NEW BRIGHTON, MINN. — Twenty-year-old Giacomo Naylor, 16-year-old Lukas Naylor, 13-year-old Isadora Naylor and Gianna Naylor were all born with myotonic dystrophy — a genetic disorder that causes muscles to waste away.
"It's a disease that's a coin flip with every pregnancy," single mother Liz Naylor said, adding that she didn't know that each child had the condition until much later.
Gianna Naylor passed away at age 16, a loss Liz Naylor says was tragic and beautiful.
"She was so determined to go out on her own terms, and Giacomo Naylor is now doing the exact same thing," she said.
But there's one thing Giacomo Naylor wants to do differently.
"I don't want to die in a hospital," Giacomo Naylor told his mother.
So, they're doing what the family loves to do most: travel. They're calling this road trip "G's Last Stand."
"I've never been more ready for anything in my life!" Liz Naylor said. "It's going to be chilly in Philly."
From Philidelphia, it's a tour of the southern states, and even a few "haunted places," as well as Legolands at the request of Giacomo Naylor. The Naylors will then tour California and make their way back to Minnesota through Montana.
When asked what part he's most excited about, Giacomo Naylor said the Alamo and anywhere in the south because it doesn't have snow.
The Naylors and their personal care assistant, Isbella Olson, began their roughly month-long trip Wednesday in "Fortuna" — their 1995 Ford conversion van. And yes, Gianna Naylor is with them in spirit.
"It's really hard to think about, but I'm trying to remind myself to stay in the present," said Olson.
"G's amazing, he's a rockstar and he's standing," said caretaker Seray Lansana.
"I think every time I come home I know it's the last time I'll see someone and usually you don't know who, but this time you know who it is," said Tina Richardson, Liz's sister who flew from New Zealand for one last hug.
Momma Bear Liz Naylor is also juggling grad school, a small business and her own nonprofit called "My-Vida," helping foster healing.
"It's so hard to be sad when there's so much joy and love around us," Liz Naylor said. "Everybody should be able to leave this world with as much autonomy as much dignity, as much comfort and as much joy."
And there's one dream that G makes it through the whole trip.
Visit G's Last Stand on GoFundMe, and follow along the Naylors' journey on WCCO throughout December.
