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Mellette family faces home fire, son’s rare diagnosis

November 10, 2018

MELLETTE, S.D. (AP) — Cody Carey has been through quite a bit his seven months of life.

He was born April 4 to Samantha Hommel and Kyle Carey. He will never remember his first home in Mellette.

Cody’s baptism was May 27, and the family celebrated at the home. But shortly after the happy occasion, a fire broke out.

“It was probably 15 to 20 minutes after the last guest had gone home, and an hour later we had completely lost our house,” Hommel said.

The fire gutted the interior. The family lost pretty much everything. A friend offered a home for rent in Mellette. And the community rallied around them to help, Hommel said by phone last month.

Tragedy wouldn’t be a stranger. As they were busy getting their feet back under them after the fire, something gnawed at Hommel about Cody’s development. He was about three months old. He wasn’t hitting certain milestones at the same time his sister, Kenlee Hommel, now 5, had and he wasn’t very active, Aberdeen American News reported.

“He wasn’t eating well at all. He slept a majority of the time. He was spitting up a lot. We thought it was acid reflux. We took him into his doctor, gave him medication and that wasn’t working,” Samantha Hommel said.

In July, Cody was admitted to Avera St. Luke’s Hospital, and after five days without a conclusion, he was transferred to Sanford Children’s Hospital in Sioux Falls.

“He had OTC based on his ammonia levels,” Hommel said.

Ornithine transcarbamylase deficiency is a metabolic disorder that affects liver enzymes.

Cody was flown to the University of Minnesota in the Twin Cities. His case is rare because he’s of the 25 percent with the already-rare disorder who don’t have a genetic link to it, Hommel said. His liver doesn’t make enough arginine and citrulline to remove proteins, so instead of them being released in urine, they get stored, Hommel explained.

It was determined Cody would need a liver transplant, and he was discharged Aug. 13 with directions for a protein-restricted diet until a donor can be found. He’s shown some improvement already, and he’s passed the 20-pound mark, which is where the doctors wanted him to be before an operation, his mother said.

“We are doing (physical therapy) and (occupational therapy) with him currently, helping him do exercises. He’s doing really well now,” Hommel said. “He rolls from back to tummy and tummy to back really well.”

Cody has a status of 1B on the transplant list, which means it could take days or a few months — but not years — for a donor liver, she said. After the transplant he should lead a pretty normal life. With a liver — unlike with a heart or kidney transplant — Hommel said her son should only need the one operation.

“For the most part, he’s going to live a pretty normal life. He might have to watch his protein intake a bit. He can play sports but not contact sports,” Hommel said. “He’d just have his anti- rejection medications for life. If everything goes the way it should and his body doesn’t reject (the new liver), he should have it for life.”

The community of Mellette pitched in again during the family’s medical travels. Neighbors and friends helped in myriad ways, like mowing the lawn and watching the family dog, she said.

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Information from: Aberdeen American News, http://www.aberdeennews.com

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