Amos Hertzler is hanging in there.
But the child of traditional Amish parents from the outlying Southern Tier has had a rough couple of months.
Amos, who was born with Down syndrome as well as a rare esophageal condition, remains hospitalized in Boston, Mass., the child’s family said this week.
Amos, who is now just over 2 years old, has suffered some complications in recent months.
“Little Amos isn’t doing so good just now,” said Noah Hertzler, his uncle.
His esophagus, which had been stretched and attached to his stomach by doctors earlier this year, developed “weak spots” and had to be connected over again, said Hertzler, who lives near his brother Aaron, Amos’ father, in Mansfield Township, Cattaraugus County.
“They had to redo it,” Hertzler said.
In addition, Amos has a hiatal hernia and also has had the flu recently, his uncle said, and has been on oxygen to help him breathe.
“Since the last operation, he hasn’t been doing as well as he should,” Hertzler said. “He’s not gaining like he should. He usually snaps right out. This time, he’s not.”
“You never know what to expect with an operation like that,” Hertzler added. “The doctors did as well as they could.”
Doctors at Boston Children’s Hospital were not available to talk about Amos’ case this week.
The community of traditional Amish in the Southern Tier will come together to help raise funds for Amos’ care this weekend. A pancake breakfast will be held Saturday in the Otto Fire Hall, starting at 6:30 a.m. and running until 2 p.m.
The cost of Amos’ care in Boston was estimated at $245,000 when he entered the hospital there earlier this year.
Hertzler said the family is trying to raise $40,000 toward the treatment with this new round of fundraising. They have paid the bulk of the hospital bill already through such fundraisers and an auction, Hertzler said.
Traditional Amish, including the Hertzlers, do not use insurance and pay for medical treatment on an as-needed basis, often by holding benefit events and fundraisers within the community.
Amos Hertzler was born in 2010 with Down syndrome as well as esophageal atresia, a condition in which the esophagus does not connect to the stomach.
From the time he was born, Amos could not eat or swallow, because of the atresia. He was unable to talk. Any time he got a cold or cough, it was potentially serious, because of the congestion that affected him.
Aaron Hertzler, a carpenter and chairmaker, and Katieann, his wife, have another son, 7.
The family lives on a forested hilltop off a dirt road. They have a home – which Aaron and other Amish built by hand – and a barn and workshop for Aaron Hertzler’s woodwork. In the manner of traditional Amish, the Hertzlers do not have electricity, central heat, telephones or running water.
Amos Hertzler was treated in Women & Children’s Hospital in Buffalo for the first year of his life, but the Hertzlers then made the decision to take him to the Boston hospital for care.
Doctors in Boston specialize in treating esophageal atresia in children, using a stretching method for connecting the esophagus to the stomach.
The treatment period has tested the resolve of Amos’ parents, who have spent most of the last year with him in Boston, while their other child has remained in Western New York with relatives.
“They’re trying to look on the bright side,” Noah Hertzler said.
He said his brother has picked up some carpentry work in Boston to help the family get by. “They’ve been in Boston the whole time. Aaron came home maybe four or five times now. The rest of the time they are with [Amos],” Noah Hertzler said.
The pancake breakfast will feature Amish food items like scrambled eggs and pancakes, sausage, pure maple syrup, doughnuts and other baked goods.
Baked goods will be available for purchase. Besides food, quilts and other handcrafted items will also be available for purchase.
Noah Hertzler said the pancake breakfast will not have a set ticket price. People are welcome to make a free-will offering.
Every bit of the money will go toward Amos’ care, his uncle said.
“It’s for the hospital bill,” he said. “People can put in whatever they want. It all goes to the hospital bill.”
The Hertzlers have set up a fund for Amos’ care at Cattaraugus County Bank, which can be called at (800) 882-9903.