Jackson Barnes said his favorite part of his Make-A-Wish Foundation trip to Disney World this month was the part when he felt Mickey’s nose and ears and touched a dolphin.
The 6-year-old Cabot child experienced the magic with his hands instead of his eyes because he is going blind.
Jackson was diagnosed in May with a form of Batten disease, a fatal disorder of the nervous system caused by a gene mutation. His vision is rapidly deteriorating. Children with CLN3, his classification of the disease, have a life expectancy of 15 to 30 years, according to the National Institutes of Health website.
“He can only see light perception now,” said his mother, Stevi Barnes. Jackson attends kindergarten at Arkansas School for the Blind and Visually Impaired in Little Rock.
Barnes, a single mother of two, contacted Make-A-Wish soon after Jackson’s diagnosis.
“He’s all about the characters and seeing dolphins; he wanted to see dolphins and the beach. It just breaks my heart that he can’t see the beach,” she said.
But he played in the sand at the beach on their trip to Orlando, Florida, from Nov. 7-14. Barnes took her stepmother, Kay Waters of Cabot, on the trip, along with Jackson and his 4-year-old sister, Rylee.
“We went to Universal [Studios] and saw Captain America, Spiderman, all the superheroes,” Barnes said. “He got to walk around with Chewbacca.”
Chewbacca, a character from Star Wars, held Jackson’s hand and cleared the way through the crowd, Barnes said, and took him to a quiet place.
She said that as the characters took Jackson’s hands and let him explore their faces, another Disney employee described the characters to Jackson.
“Daisy Duck doesn’t have a nose! She has a beak,” Jackson said during a phone interview. “I saw Bo Peep, Woody and Buzz.”
Jackson said he rode a lion on the carousel, and “my sister rode a pig.”
The family also went to Sea World as part of the Make-A-Wish trip.
“I fed a dolphin a giant fish,” he said. And Jackson’s wish to pet a dolphin came true, too. “It felt like rubber,” he said. “The stingrays were slimy like they always are.”
He also enjoyed strawberry ice cream — as much as he wanted.
“We stayed at Give Kids the World, and they’re absolutely amazing,” Barnes said of the village. She said Jackson received a gift every day from a “gift fairy.”
Gina Quattlebaum, membership and events coordinator at the Cabot Chamber of Commerce, was Jackson’s wish-granter. It’s a role she’s had the past 15 years, and she was assigned to Jackson’s wish.
Quattlebaum recalled meeting Jackson and his family to talk about his wish.
“Parents may say, ‘We’ve talked about it,’ but the primary focus is always the child. We want to make sure the parents are not driving the wish; it’s the kid driving the wish,” she said.
Quattlebaum had been told that Jackson wanted to go to Disney World and that he loved superheroes.
“We knew this would be different; he’s losing his vision rapidly. He was very excited about superheroes — oh, my goodness. We always take an ice-breaker, just a little gift. We brought him a Captain America [toy].
“I said, ‘What would you do if you got to see Captain America?’ He said, ‘Oh, we’d fight bad guys,’ and ‘I’d give him a hug.’ He was very inquisitive, very giggly,” Quattlebaum said. “He had to hold things very close to see. [We had to figure out], if he did go, what would he be able to experience visually?”
The wish reveal was held at a Cabot Sonic Drive-in.
“He’s a typical little boy — you wouldn’t know [anything was wrong],” Quattlebaum said. “When he came to his wish reveal, he had a cane. I said, ‘Jackson, what is that for?’ He said, ‘It’s what people use when they go blind.’ He said it with a smile on his face. I was like, “Oh, I just love you.’”
Barnes said she noticed Jackson was falling behind his younger sister in writing.
“He was fine up until he started Pre-K, and whenever he started Pre-K and my daughter started Pre-K3, when they colored papers that were being sent home, I noticed she was ahead of him in coloring, and he was regressing.”
Barnes said she has done research and is trying to get Jackson in research trials for the disease.
“When I found out in May, that’s all I did was research, and we went to a Batten disease conference, and I just jumped straight in. I’ve been going nonstop ever since,” she said. Barnes said Jackson spent a week in a Maryland hospital as part of a research study and will go again next summer “to track his progress and, hopefully, find a cure.”
According to the National Institutes for Health website, most children who have Batten CLN3 disease have a missing part in the gene, which in turn results in inability for the protein to be produced. Rapidly progressive vision loss begins between ages 4 and 7. Children develop learning and behavior problems, … dementia, and start having seizures around age 10. In the teenage years, children affected by CLN3 disease develop slow movement, stiffness and loss of balance. They also develop difficulty with speech and language.”
The disease affects an estimated two to four out of every 100,000 children in the United States, the website states.
Barnes said Rylee was tested and is a carrier of the gene, which means she won’t develop the disease but could have a child with the disease.
She said Jackson is on a list waiting for approval to go to Ohio for a treatment trial, and there’s also a Batten disease research center in Rochester, New York, and a doctor she is hoping can meet with Jackson.
Barnes said she realizes the journey ahead of them will be hard.
“My main goal is to make sure he can experience everything he can until he can’t. Around 9 or 10ish, they start having seizures, so I try to do stuff now while the vision is the only problem, so to say, before we have more problems to deal with. That way, he can get more out of what he can,” she said.
Barnes said she has a “passport” through Give Kids the World Village that lists parks that children with life-threatening illnesses can get into free.
The Make-A-Wish trip to Disney World was a reprieve from day-to-day stresses, Barnes said.
“Honestly, it’s something I could have never given him,” she said.
And she said Jackson is still talking about it.
Senior writer Tammy Keith can be reached at (501) 327-5671 or firstname.lastname@example.org.