The 8-year-old boy slowly began to lose his words in 2007, finally speaking his last word at a restaurant.
“Appetizer,” Coleton Wright said while looking at a menu. His parents never heard him talk again.
The child who liked to chat in line with shoppers at the grocery store and talked with both strangers and friends around town in Edinburgh no longer could say hello.
His eyes were still bright, and his mind remained alert shortly after that, so he communicated with laughter, smiles, kisses, hugs and hand holding.
His parents, Chris and Joy Wright of Edinburgh, had to watch Coleton’s health deteriorate before they got a diagnosis. They took him to a pediatrician when he forgot how to spell his own name on the first day of third grade and wasn’t obeying his teacher at school, which was an abrupt behavioral change.
The Wrights’ pediatrician referred them to a doctor at Riley Hospital for Children at Indiana University Health, where they learned Coleton needed to be tested for a genetic disease called adrenoleukodystrophy. The brain disease is degenerative and fatal.
Coleton had begun to drool constantly and had to wear a bandana around his neck like a bib. He also lost control of his bowels and had to wear diapers.
They thought he had about seven years to live, but his parents didn’t know how short his life would be until three months later when the test results came back. The doctor had asked the Wrights to promise not to do any research on the disease but to wait for the test results.
On Dec. 3, 2007, she explained the diagnosis: Coleton was one of four children in the state with the brain disease, and he was expected to die within three to five years.
His life would steadily fade in front of them.
Chris and Joy Wright decided immediately that Joy Wright would care for Coleton rather than allow him to be moved into a nursing home. The family would stay together, and his mom would feed him through a tube, change his diapers and use a machine to suction fluids from his throat when he struggled to breathe.
When Joy Wright lost her job in 2008 because she was struggling to focus at work, the family saw it as an opportunity for her to stay home full time with Coleton.
They tried to keep life happy and comfortable for Coleton. He couldn’t speak or write to say where he wanted to take his Make-A-Wish Foundation trip, so his family talked about what he enjoyed before he got sick. Because the boy could still walk, the whole family went to Disney World in Florida.
As the doctor predicted, Coleton’s walking slowed over time. He would stumble, sit down briefly, then get up and keep going. Soon the boy who loved to play baseball, basketball and football couldn’t walk at all.
He could laugh even when he was bedridden, but paralysis spread through his body so that eventually, he could only crack a half-smile. In 2009, the personality and the life in his eyes were gone. He went blind and deaf.
“He wasn’t there anymore,” Chris Wright said.
For five years, Coleton lived mostly unresponsively in a hospital bed at home, where Joy Wright gave him his medications and tried to keep him comfortable. He turned 15, beating his predicted life expectancy by about two years.
His mom talked to him all day, although she didn’t think he could hear her, and she didn’t know how much his brain was functioning.
Joy Wright said she could sense if her son wasn’t feeling well even when he couldn’t speak and could barely move. She could tell by the color of the skin around his eyes, the sounds he made or the way he coughed.
At the end of June, Joy Wright thought her son wasn’t feeling well and may have gotten pneumonia. A nurse visited them at home, but she said he seemed OK.
On July 1, Chris Wright followed his before-work routine with Coleton — he said goodbye and I love you, then kissed his son on the forehead. That was the day Coleton died.
Their grief has been spread out over years, with a funeral planned since 2008. Coleton’s death this year was a relief because he was trapped in his own body and mind without anyone knowing how much he understood or what he was feeling, Chris Wright said.
People have asked why the family took care of Coleton at home, following a schedule of feeding him and giving medication, bathing him and changing diapers. They maintained a one-sided relationship with the teenage boy for years.
“Why wouldn’t you? As parents, you should want to do everything that you can for your child,” Chris Wright said.