Emalynn Roberts is a 15-year-old girl who likes Taylor Swift, wears purple eyeshadow and wants her own car (preferably white or silver).
Unlike most other girls her age, she wasn’t expected to live past the age of 4.
“There are no limitations in her heart and mind,” said Katie Roberts, Emalynn’s mother.
Emalynn is on a ventilator, a result of a genetic disorder called riboflavin transporter deficiency, or RTD. She has lost most of her sight and hearing and uses a wheelchair because of muscle failure in her legs, which she drives herself.
RTD affects the motor and sensory nerves, causing muscle weakness, progressive deafness and vision loss and sensory ataxia. The Cure RTD Foundation says when left untreated, the disorder is 50% fatal.
Although treatment is available, doctors still haven't found a cure. Between 2010 and 2022, only 350 individuals were diagnosed – less than one in one million.
“Emalynn’s a fighter. She is an absolute fighter,” said Katie.
Roberts, along with Emalynn’s day nurse, Ashley Bradley, say they have difficulty transporting Emalynn to and from school, doctor’s appointments and long trips.
“We’ve been to places where they don’t have anything for her to ride in… we always have to bring something for her to sit in, some of our own equipment, and it’s tight with our own vehicles,” Bradley said.
Project Spark is a nonprofit subdivision of Palmetto Garage Works: Midas, the auto-shop chain. The charity refurbishes donated vehicles and gifts them to families in need. The Roberts’ received one of these wheelchair-accessible vans recently at Midas Gainesville on Archer Road.
“Thank you, from the bottom of our hearts, truly. This is a game changer,” Roberts said.
“It’s going to be so much easier. Mom doesn’t have to lift all of these things and (Emalynn) can ride and feel more comfortable, more secure,” Bradley said.
Emalynn’s great aunt, Captain Sandy Yawn of the reality TV show “Below Deck Mediterranean”, researched the Project Spark program and reached out to Midas to get her family the vehicle.
“Obviously we take care of our family first,” Yawn said. “I’ll be able to sleep better at night because it’s my family.”
Steve Baker, the Palmetto Garage Works director of operations for the Florida region, said the Project Spark program was designed to give back to the community. “Things that we take for granted every day, just getting up in the morning and brushing our teeth and driving to the grocery store, we don’t realize that some people can’t do that.”
Baker said the van, a restored 2011 handicapped Toyota sedan, was not in bad shape when it was donated. The Midas Gainesville team fixed it to ensure the van was safe. The team changed the fluids, replaced the spark plugs and did suspension work.
“There’s no charge whatsoever,” Baker said. “We foot the bill as far as the labor, and the company foots the bill as far as the parts needed.”
Emalynn practiced wheeling up and down the ramp for 20 minutes. Before the van, her wheelchair had fallen over on multiple car rides in non-handicapped vehicles.
“Her humidifier has tipped over and water has gotten in her machines. We’ve ended up in the ER because Emalynn didn’t have a backup wheelchair,” Bradley said.
Roberts said her prayers were answered. She and Yawn said they are certain the van will change their daily lives.
“It takes her about 45 minutes to get in a car,” Yawn said. “This is going to allow Emalynn to drive her wheelchair onto the lift and it’s probably only going to take about 10 or 15 minutes.”
Baker said he hopes the van will make Roberts and Emalynn feel a bit more normal.
Despite her limitations, Roberts said Emalynn tries to maintain the life of a teenage girl.
“She’s sassy and she’s funny and she finds the good in everything,” said Roberts. “She wants to do all the regular teen things, she doesn’t want things easy – she wants life like everybody else.”
And Emalynn already has plans for her first ride, after she decorates her car with Taylor Swift stickers.
“Where should we go first?” Roberts asks her daughter.
“Disney,” Emalynn replies.