Utah – Years of suffering – and months of struggling with the decision to end it – had brought them here: To a bright white living room where three of their children lay side by side by side, waiting to die.
Les and Celeste Chappell loved the children, of course, and the thought of letting them go was excruciating, but holding on was just as painful.
The children – Christopher, 20; Elizabeth, 19; and James, 15 – had been ravaged by a ruthless neurological disorder that, over the years, had stolen their ability to see and to swallow, to move and to remember. Life support was only prolonging the inevitable.
So one Thursday in July, at their home in Springville, Utah, their parents braced themselves for what would become a long weekend of death.
Three hospital beds were set up in the living room with the cathedral ceilings and high-reaching windows that let in the streaming sun.
The three children were made comfortable with morphine and lorazepam, a sedative used to control seizures, and their parents started to pray.
Then they stopped the tube-feedings and watched their children, one by one, silently slip away.
The obituary was a single notice, cataloguing all three deaths.
“Surrounded by family, Christopher Lamont Chappell, age 20, passed away Sunday July 16, 2017,” it read. “He was born December 13, 1996.”
“Elizabeth Anne Chappell, age 19, passed away Friday July 14, 2017. She was born June 21, 1998.”
“James William Chappell, age 15, passed away Saturday July 15, 2017. He was born October 20, 2001.
“Christopher, Elizabeth, and James were born to Lester and Celeste Chappell of Springville,” it read. “Each had for many years courageously fought a degenerative neurological condition, juvenile Batten disease.”
It was an unusual obituary – three siblings, three deaths, three days – that raised questions among those who knew nothing of the family’s circumstances.
But the local authorities had no reason to look into it; they knew it to be an incomprehensible tragedy for a family with a genetic curse – but nothing more.
Death had come quicker than Les and Celeste expected.
The hospice team had told them that the three children might hold on for days or even weeks – which the parents were not sure they could endure.
But not long after noon that Friday – only hours after the tube-feedings stopped – Celeste watched Elizabeth take her last breath.
Afterward, Elizabeth’s parents and sentient siblings sat around her body for hours, sharing favourite memories about a girl who once played with princesses, but also loved to be outdoors.
Her father pulled out the Book of Mormon and read about the paradise where they believed she had gone.
When the mortuary eventually came to take her body away, Les and Celeste followed the gurney outside.
Then they went back in, to wait once again.
There had been 10 Chappell children in all, but Elizabeth was now gone, and two of her brothers were dying. And Les and Celeste’s youngest boy, 10-year-old Samuel, also had the fatal disease.
Surrounded by family, the parents prayed quietly and constantly – pleading for strength, comfort and peace, and holding tightly to their belief that they would all be reunited one day in heaven.
By Saturday morning, James, who had struggled the most with juvenile Batten disease, had also died.
His mother sat with him as he took his last breath, then the family remembered a baseball-lover so devout that even after he had gone blind, he begged his father to toss the ball and tell him when to swing.
Again, the mortuary came to retrieve the body.
Again, Les and Celeste followed the gurney out to watch their son being taken away.
Again, they returned to their living room, where Christopher was diminishing rapidly.
The couple stayed up late that night, clinging to their son’s bedside, desperately trying to stay awake. They were physically and emotionally exhausted. “But how can I sleep when my babies are dying?” Celeste thought.
As the parents woke up early Sunday morning, Christopher, too, was fading.
“He’s gone!” his mother said, watching intently as the color drained from his face.
Family members shared stories about a boy who had loved toy cars and trains.
Again, the mortuary came – and again, Les and Celeste watched as another one of their children was carried away.
It had been unbelievably difficult, but it was done.
Les and Celeste began seriously discussing the disease that would fracture their family during a date night, in late 2005.
After dinner, the couple pulled over in front of a sporting goods store in Schaumburg, Ill., a Chicago suburb, to talk about three of their children. Christopher, Elizabeth and James had been having issues with their eyesight, and Elizabeth and Christopher were now starting to have seizures, too.
Something was obviously and terribly wrong.
The Chappells had taken the children to see specialists, and had heard for the first time about Batten disease.
It is the most common among several rare autosomal recessive disorders, and for those who are diagnosed with it, it is also a death sentence: It often kills its victims by the time they are in their late teens or 20s.
When Les finally began to research the disease, the symptoms seemed eerily familiar: Batten disease typically presents with vision problems and seizures in children between the ages of 5 and 10, then causes personality changes, learning difficulties and loss of motor function, according to the National Institute of Neurological Disorders and Stroke.
Christopher had struggled to see since he was 3. He started standing too close the TV to watch cartoons and there was also hesitation in his movements, most evident when he tried to run to keep up with his siblings.
Early on, Elizabeth had lost the ability to see colors: When she was 6, her mother told her to pick up a crayon from the bathroom floor – but the young girl couldn’t identify what colour it was.
Then came the seizures.
So that night, Les finally said it out loud – that he thought the children had the disease. Celeste, too, had been researching the disease on her own, and she knew he was probably right.
They both understood what that meant – dementia could descend on the children, erasing their memories and thrusting them into episodes of anger and tears. They could lose the strength to run, then to walk, then to crawl. Their sentences could become repetitive and incomplete, until they were left with no words at all.
Then they could lose the ability to swallow, which would leave the parents with an agonizing choice: Tube-feed their children, or let them die.
Elizabeth was genetically tested for Batten disease about a month later, and the results confirmed the couple’s fears. Doctors then diagnosed Christopher and James by their symptoms alone.
The genetic condition is rare, affecting just two to four out of every 100,000 births in the United States; but it is not unusual for Batten disease to strike multiple children within the same family.
Such was the genetic misfortune of Les and Celeste: They had already been visited by juvenile Batten disease three times – and there would be a fourth.
Celeste was pregnant with a son, Samuel, who would also be diagnosed with the deadly condition.
The devastating diagnoses robbed the Chappells of the dreams they held for their terminally ill children. Christopher – smart and curious, always asking questions – should have grown up to be a doctor, his mother always believed. Elizabeth was perhaps destined to be a gymnast, and James a ballplayer.
Instead, Les and Celeste watched them decline, grieving each loss as it came – seeing, walking, taking, eating, and then living.
But they tried not to let it overshadow life – finding moments of happiness and humor, even lovingly referring to the trio as “our three blind mice.”
Les, a software engineer for Sears Holdings Corp., and Celeste, a registered nurse and stay-at-home mom, had moved in recent years to Springville, about 50 miles from Salt Lake City, to be closer to family.
There, the parents had been tube-feeding Elizabeth and James, and had seen what it had done to them – helping to keep their ailing bodies alive, even though they had nearly shut down.
So when they had to determine how to care for Christopher, they decided not to intervene.
And it only made sense, they said, to stop the same treatment for Elizabeth and James.
The unfathomable choice had been made.
Days after the deaths, the Chappell family gathered at the Church of Jesus Christ of Latter-day Saints in Springville, in a chapel where three silver caskets were lined up, end to end to end.
Each was blanketed with a flower spray to fit each child’s personality – yellow sunflowers for Christopher, who was always smiling; pink roses for Elizabeth, their princess; and deep blue wildflowers for James, who was all boy.
Their grandparents spoke at the funeral, remembering when Elizabeth still had her sight and would act as Christopher’s eyes.
Jeffrey and Matthew shared deeply personal stories about their younger brothers.
A sister, 17-year-old Larissa, played “How Great Thou Art” on the violin.
A sister-in-law sang a Mormon hymn, “I Know My Redeemer Lives”:
“He lives, my kind, wise heav’nly Friend.
“He lives and loves me to the end.
“He lives, and while he lives, I’ll sing.
“He lives, my Prophet, Priest, and King.
“He lives and grants me daily breath.
“He lives, and I shall conquer death.
“He lives my mansion to prepare.
“He lives to bring me safely there.”
After the funeral, where hundreds of friends and neighbors and relatives came to remember the siblings, the Chappells traveled 2 1/2 miles to Evergreen Cemetery, where clouds rolled over the hot desert sun.
Les and Celeste had purchased three double-depth burial plots there – one for themselves, the others for their terminally ill children.
Christopher and Elizabeth, who shared a special friendship, were placed into the same hole in the ground.
James was lowered into the other plot, leaving vacant a space above.
That space now waits for Samuel.
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