Les and Celeste Chappell loved their children, and letting them go was excruciating, but holding on was just as painful. Christopher (20), Elizabeth (19) and James (15) had been ravaged by a ruthless neurological disorder. Over the years, they lost their ability to see and swallow, move and remember. Life support was only prolonging the inevitable.
So one day at their home in Springville, Utah, the parents braced themselves for a long weekend of death. Three hospital beds were set up in the living room, their children 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.
Les and Celeste began seriously discussing the disease in 2005. Christopher, Elizabeth and James had been having issues with their eyesight, and Elizabeth and Christopher were having seizures.
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.
Parents understood 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.
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 to stop the same treatment for Elizabeth and James.
The unfathomable decision had been made.
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