By DEVASTASHA BEAVER
A 21⁄2-year-old Ashtabula boy living with a rare disease will get his wish to meet Mickey Mouse next month, thanks to a Kingsville woman who took it upon herself to contact Give Kids the World.
Carson Locher has CHARGE syndrome, a rare disease that has many effects ranging from hearing and vision impairment, to eating and growth problems along with balance issues. Carson was diagnosed two days after his second birthday.
His mother, Jessie Beals, said a woman who knows them only through following the Facebook page “Carson’s Story,” has made it possible for their family to go to Disney World in July.
“I have followed Carson’s story since he was born and saw all of the pictures and posts about how much he loves Mickey,” Alisha Murton said. “I messaged Jessie and asked if she had tried Make-A-Wish, but she said Carson was turned down. So I talked to my aunt’s friend, whose daughter benefited from Give Kids the World and told her Carson’s story.
“It was literally a ten-minute phone interview (with Give Kids the World) and he was approved within the day for the Disney trip,” she said. “I didn’t know it was that easy, or I would have done it a long time ago.”
Give Kids the World is a non-profit organization that provides children with life-threatening diseases a week-long fantasy vacation with their families. The Give Kids the World Village is 70-acres of storybook-like features and attractions.
Beals said, “When they called, they asked when we’d like to take the trip, so I checked when Carson’s dad could get time off of work and they said the first week of July was taken, so we took the second.”
Coincidentally, Murton had already scheduled a trip to Disney for the same week for her family. “It was just perfect, perfect timing,” Murton said.
“I’m ecstatic,” Beals said. “I think I’m more excited than he is. While we’re down there we’re going to meet up with a few CHARGE families that live in Florida, so that will be fun since the CHARGE conference isn’t until next summer.”
Carson’s trip will be all-expenses paid, including airfare and rental car. From July 11 to 17, Carson, his mom, dad, brother and sister will stay at the Give Kids the World Village near Disney World. They received tickets to four different Disney parks and Sea World, and Tiny Superheros, who made a cape for Carson, gave the family tickets to Legoland.
“This trip is going to be once-in-a-lifetime,” Beals said. “The kids will wake up every morning to gifts from the Gift Fairy, and they get everything they could want. This will be the first big thing that Carson has done with his whole family, so it’s going to be really special.”
However, upon return from Florida, Carson will be scheduled for a slew of procedures, Beals said. Doctors recently diagnosed Carson with a cleft esophagus and his cardiologist found that his heart isn’t growing. He will also have eye surgery and his G-tube (feeding tube) will be switched to a GJ-tube (the feeding catheter will be placed through the existing gastronomy hole in the stomach into the small bowel).
While he still cannot have liquids by mouth because he aspirates them, Carson is now able to eat small amounts of soft foods. Beals said he will still chew and spit out textured foods, however.
She said she hopes the cleft-esophagus repair will solve his aspiration problem. “We’re staying positive,” Beals said. “I can’t say we’re 100 percent positive, but we’re trying to stay positive.”
“In Sept., he’ll be starting outpatient therapy in Cleveland because they don’t have pediatric outpatient therapy available around here,” Beals said. “His physical therapist is amazing. I’m sad that we’re losing him in August.”
Carson is also getting much better about walking without his walker and with communicating (via sign language with some words), Beals said. After his birthday in August, he will start preschool at Happy Hearts.