ST. CHARLES – Six-year-old Alex Freund is a happy little kid facing challenges uncommon to most children.
Alex, who was diagnosed with a form of Rett syndrome, never has stood on his own or walked, can’t eat solid food, and has yet to speak his first word, his grandfather Frank Cesario said.
“His life is always going to be a struggle,” he said.
Although Alex lives with his parents in St. Charles, Cesario said he and his wife are involved in the boy’s care and drive him to his doctor appointments and therapy sessions. Alex, however, is outgrowing his car seat and is getting too big for Cesario – whose health limits what he can lift to 10 pounds – to pick up, he said.
The family needs a wheelchair-accessible van, Cesario said. The vehicle would not only be safer transportation for Alex but also it would make it easier for his family to take him to places other than health-related appointments.
The vans cost between $45,000 to $55,000 – an expense the Cesarios hope to afford with the community’s help. On Oct. 14, they will host Safe Ride for Alex at the Arcada Theatre in downtown St. Charles.
The generosity of others is making the event possible. Ron Onesti is donating the use of the theater and is supplying the food, Cesario said, and a family friend helped line up the entertainers.
“Really, a whole bunch of people are coming together to help a disabled child,” Cesario said.
Cesario is expecting 250 attendees – about 180 already have confirmed – but he wants to fill the 900-seat facility, he said, noting they have about 200 baskets and silent auction items to give away.
The family hopes to raise $50,000. So far, Cesario said, they’ve received more than 300 personal donations, which total about 60 percent of their goal.
“It’s been wonderful,” Cesario said. “We never thought we’d do this well trying to raise money for him.”
A video about Alex and his condition is available at www.saferideforalex.org.
Because Rett syndrome affects the X chromosome, the neurological disorder is almost exclusively diagnosed in girls. Most boys with the genetic mutation die at birth.
Twice a year, Cesario said, Alex participates in a study that examines kids with Rett syndrome and documents their growth. Through that, his family has learned of only a few males with the syndrome. One, a 26-year-old in Michigan, is on a respirator and cannot move.
“The future isn’t bright for Alex,” he said. “It’s grim.”
But Alex is a happy kid.
“He lights up our day when he smiles,” Cesario said.
For information about Safe Ride for Alex, contact Cesario at firstname.lastname@example.org or 630-587-2236.
If you go
What: Safe Ride for Alex When: 3 to 7 p.m. Oct. 14 Where: Arcada Theatre, 105 E. Main St. Tickets: $40; $10 for children younger than 15; RSVP by Sept. 30 Website: www.saferideforalex.org