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Amish boy Amos Hertzler continues to struggle with health problems

It’s been almost a year since little Amos Hertzler came home from a hospital in Boston, Mass.

But the Amish baby born with Down syndrome and serious medical complications – including an esophagus that does not connect to his stomach – is still struggling. That’s why his family and his community are rallying once again to help pay his medical expenses.

A pancake breakfast is scheduled from 7 a.m. to 2 p.m. next Saturday in the Otto Fire Hall on Jark Road. Breakfast foods will be served. There also will be a bake sale, quilt and craft sale, and silent auction of a set of new oak chairs made by the Hertzler family. No admission fee will be charged, but donations toward Amos’ care will be accepted.

The event is being held because, like many traditional Amish, the Hertzlers don’t have medical insurance and pay for their hospital care when needed.

“It’s to help with the medical bills,” said Aaron Hertzler, the litle boy’s father. “It’s for Amos.”

Amos, now 3, had complicated medical procedures during a 15-month period he spent in Boston, which ended last spring. During that time, doctors tried to connect his stomach to his esophagus. But the process ultimately proved unsuccessful – and Amos finally came home, on a feeding tube.

Now, Amos still needs a tube to eat, his father said.

“He’s doing fairly well,” said Hertzler, a furniture-maker in Mansfield who, with his wife, Katieann, has one other son. “He gets sick pretty easy. We’ve had to keep him home most of the winter.”

Amos was born with Down syndrome and also with a rare condition called esophageal atresia, which means his stomach is not connected to his esophagus. The condition affects roughly 1 in 4,000 children. The Buffalo News has been following the story of Amos since the fall of 2011, a year after he was born in the outlying rural regions of Cattaraugus County.

Hertzler said his son is growing well, despite his medical problems.

Over the past two years, Amos underwent procedures at the Children’s Hospital in Boston. He came home in April of last year.

“He’s gaining weight. He’s getting stronger,” said Aaron Hertzler. “He’s getting close to standing on his own without help.”

Amos’ continuing care costs the family a lot of money, his father said. The family has had to travel to Boston and other cities – by Amtrak or being driven in a car by a non-Amish friend, since traditional Amish don’t drive – numerous times in the past year for follow-up care, Aaron Hertzler said.

“The formula he uses is very expensive. The feeding tube changes are expensive,” said Hertzler. “It all adds up.”

The family realizes that Amos will likely need to have more surgery or medical interventions down the road, to try to connect his esophagus, Aaron Hertzler said. But, he said, they are not planning to do that now.

“Surgery is something we’ll probably have to do at some point,” Amos’ father said. “But not now.”

Hertzler said his son was “really well” last summer, after coming home from Boston, but has been having more trouble in recent months. Overall, though, Amos continues to be an upbeat little boy, his father said.

“He’s a happy little guy,” Hertzler said. “For the most part, he doesn’t complain much.”

Aaron Hertzler said the donations and community support they have received have played a role in getting the family through this time.

“We are thankful for all the help,” Hertzler said.

Foods at the Amish fundraising breakfast will include pancakes and maple syrup, eggs and coffee, and Amish-made doughnuts. The Otto Fire Hall is at 9199 Jark Road in Otto, at the intersection of Jark Road and Otto-East Otto Road (Route 12). The family also continues to maintain the “Hertzler Hospital Fund” at Cattaraugus County Bank in Little Valley.