Parents Sue School for Son's Right to Die

Willy Pickett was diagnosed with a rare brain disorder as a toddler and wasn’t expected to live more than two more years. Today, he attends High Point School in Scio Township. (Screenshot via WDIV-TV)

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Willy Pickett’s parents know their 11-year-old son’s light will go out early.

His mom says she’s so busy keeping her son alive that she doesn’t have time to go to court to ensure that it’s on their terms. But legal battles aside, to say they’re at odds with their boy’s school over what to do if death comes while Willy is at High Point School in Scio Township isn’t putting it quite right.

While it’s technically true that they’re suing the Washtenaw Intermediate School District to require the district to honor the end-of-life plan Willy’s parents made a couple of years ago, “the school is a Godsend, really,” mom Dawn Krause told WDIV-TV.

When Willy was diagnosed with a rare brain disorder as a toddler, his parents were told not to expect him live more than two years He can neither eat nor speak, takes hundreds of medications and day, and needs help with everything he does.

He has defied the odds doctors gave him as an infant, but sometimes suffers as many as 100 seizures a day.

“If his heart were to stop beating at school – he has a terminal disorder – we have decided not to do anything heroic to bring him back, just do comfort measures,” Krause said. “We have seen him near death many times, and we have seen him come back, never quite like he was before.”

The disagreement with the school district is over a do-not-resuscitate order, which the district says it can’t honor without violating its own policies. And without a court-ordered DNR in place, the district won’t risk the legal exposure of honoring the family’s wishes.

“I don’t have time to go to court,” Krause told The Ann Arbor News/MLive. “I have to keep Will breathing. It’s 24 hours a day. It’s our decision to make.”

But the school district isn’t budging.

In a lawsuit filed last week in Washtenaw County Circuit Court, attorneys representing Willy’s parents – who are divorced but live a short distance from one another and share custody – said the boy’s irreversible condition is worsening.

He once could propel his wheelchair across his room, but can no longer do that. As his conditioned worsened, Willy’s parents got the help and blessing of the boy’s physicians at C.S. Mott Children’s Hospital at the University of Michigan, and consulted attorneys to draw up the DNR order after thinking about it for months.

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In the district’s response, attorney Timothy Mullins wrote that “... it would be inappropriate to invalidate a school policy designed to protect students, teachers and the school district by holding that parents have the unwavering right to withhold medical care from a child.”

Mullins said the district is amenable to working with the family once a court-order is in place, but Krause thinks the school district should tweak the policy “so other parents don’t have to do this.”

The district’s life-saving policies are appropriate in most cases, she said, but not in her son’s.

“This is not a typical school where you have kids on the playground who might be injured and need resuscitating,” she said. “It’s a completely different world.”

However, adjusting the policy to meet the various circumstances under which life-saving measures might be necessary creates unnecessary confusion.

“Let’s say a bee stings the child,” Mullins wrote in the district’s response. “Do you use the EpiPen? Or don’t you use the EpiPen?”