5-year-old born with a rare disease will be sheriff’s ‘Chief for a Day’

MARYSVILLE — They call it her gift of life.

The seven-inch scar from the surgeries crosses her small abdomen.

Sarah, 5, is the youngest of Patty and Kirk Kraft’s four children. She was born with a rare liver disease and received a transplant as an infant.

This year, Sarah is the Snohomish County sheriff’s “Chief for a Day.”

For the Aug. 21 event, police sponsor a local child who has a chronic disease or terminal illness. They take the child for a day of fun at the state criminal justice training headquarters in Burien.

“Seeing the kids’ faces on that day when they forget to think about all the troubles they’re going though is an amazing thing,” sheriff’s deputy Jon Barnett said.

“Chief for a Day” is just one of many ways that friends and family have supported the Krafts throughout Sarah’s health problems, Patty Kraft said.

Sarah was 9 weeks old when she was diagnosed with biliary atresia. Her failing liver swelled with poison instead of releasing it. The bile ducts didn’t work right.

Her stomach was bloated and stretched. Her veins bulged.

That November, Sarah was in the hospital for 10 days. She underwent a Kasai procedure, which involved the rerouting of her small intestine.

About half of those with biliary atresia need a liver transplant by the age of 5, Patty Kraft said.

In March 2009, Sarah vomited blood. Patty Kraft and the baby were flown to Seattle Children’s Hospital.

Patty Kraft remembers Sarah going limp in her arms and her baby’s eyes rolling back.

“I’m a believer,” Patty Kraft said. “I was like, ‘OK, Lord, you are the king of kings. I’m just going to put this in your hands.’ ”

Sarah was kept in intensive care, and her name was added to the waiting list for transplant patients. The doctors told Sarah’s parents that her body had punched out new routes for blood to travel through because her liver and spleen wouldn’t cooperate.

The liver transplant that April took nine hours.

Within days of the surgery, baby Sarah could sit up and roll over.

The first year after the transplant held a lot of challenges, Patty Kraft said.

Sarah also spent much of this past spring in the hospital after another health scare.

Kirk Kraft works at Boeing. Patty Kraft works in the kitchen and lunchroom at Grace Academy in Marysville, which Sarah attends.

It’s been a struggle to keep things normal for the family, with their schedule disrupted by hospital stays and doctor visits, Patty Kraft said.

They focus on family time and attend The Grove Church in Marysville. They make pancakes from scratch every Saturday.

Patty Kraft is looking forward to when Sarah’s more recent surgery wound heals and the kids can take swimming classes together.

On a warm, sunny afternoon last week, Sarah and her sister, Katarina, 8, lounged in a patio chair in their north Marysville back yard.

They playfully swatted each other with pool noodles and twirled umbrellas on the porch.

When Sarah took a tumble and started to cry, Arianna, 12, crossed her eyes at her little sister to make her laugh again.

They threw apples from the backyard tree for their 71-pound German Shepherd mix, Blitz, to catch.

As Sarah grows up, she won’t be able to play contact sports, and traveling abroad could be difficult, her parents said. Children with transplants are more vulnerable to lymphoma.

Otherwise, Sarah doesn’t live with many medical restrictions.

The four kids all have a dramatic, expressive side, Kirk Kraft said. He likes to joke that he’ll soon have a full-fledged theater troupe at home.

Caleb, 10, is the comic-philosopher-scientist. Arianna is the sensitive artist. Katarina is athletic and kind.

When Sarah is sick, her siblings stay with their grandparents or friends. Their grandparents take them bowling and treat them to “breakfast for dinner.”

Sarah’s parents aren’t sure how much she understands about her disease. She will learn more as she ages.

For now, she remains the daredevil child, the silliest sibling, Kirk Kraft said. She is going through a meowing phase.

While her parents talked, Sarah hummed “Let It Go” from the animated movie “Frozen,” which she’s seen more than 50 times.

“She knows she’s the baby,” Patty Kraft said.

Rikki King: 425-339-3449; rking@heraldnet.com.