North Augusta boy nearly dies of heart, muscle maladies

Amauri Williams needs help. He has to learn to walk again. He can’t even chew solid food and swallow it. He can barely talk.

 

The active, happy 12-year-old was playing baseball a few weeks ago. Then, in an instant, he got sick – so sick he nearly died – with a mystery illness that took doctors at two hospitals a month to figure out.

“It’s been very tough,” said his mother, Sarah Hemingway. “He was a happy, healthy 12-year-old boy. He’s played baseball since he was 4. Then out of the blue, all of a sudden, it just happened. It’s really devastating to watch him like this.”

Turns out Amauri has two maladies – juvenile myocitis with myocarditis, a rare inflammation of the muscles, and cardiomyopathy, an enlarged heart.

He’s on the mend now, but far from well. He got off a ventilator Monday, his first good day in a long time, Hemingway said.

“Today he looks like he has life back in him. He has a little color,” she said. “Today is the first day we’ve heard his voice. It was a whisper, but it made us happy.”

Amauri’s and his family’s ordeal began June 10, when they returned to their home in North Augusta after a visit to the Tennessee mountains.

He began running a fever and his parents took him to an after-hours clinic, where he was diagnosed with an unnamed virus. By the next day, his fever was higher – 104.8 degrees – so he was taken to his pediatrician.

“He looked him over from head to toe, for a tick bite, or anything,” Hemingway said.

The pediatrician thought it might be a virus, too, and sent Amauri home, but he got worse and was having trouble breathing. A trip to the emergency room at Doctors Hospital showed bacterial pneumonia and, for the first time, an enlarged heart.

He was transferred to the Children’s Hospital of Georgia, which is better equipped to treat children with heart problems, his mother said.

“They ran every test they could think of — spinal tap, MRI – and couldn’t find anything really wrong,” she said.

But his heart was in such bad shape there was talk of putting him on a transplant list. As weeks dragged on, it seemed no matter what doctors did, Amauri got worse.

Then, about a week ago, he stopped breathing in the middle of the night and had to be intubated.

“He was withering away in front of us,” Hemingway said. “For a month we didn’t have answers. I can’t even describe how heartbreaking that was.”

Another battery of tests finally identified both problems and he began to get more effective treatment.

“With medicine, his heart has gotten better. He’ll have an enlarged heart for the rest of his life, but he can live with that,” his mother said.

Now it’s time for him to begin rehabilitation, relearning to walk and swallow and regaining his strength.

The best place to do that is Levine Children’s Hospital in Charlotte, N.C., his doctors told the family. They’re trying to get into the Ronald McDonald House there but hadn’t as of Wednesday.

They’ve been told Amauri could be hospitalized in Charlotte for three months, so they’re hoping to avoid a long, costly stay in a hotel.

Amauri’s mother, who had been working two jobs, quit both to care for her son. She also was about to begin the surgical technician program at Aiken Technical College but has had to put it off. His father, Terry Williams, took leave from his job as well.

With their savings drained and more bills on the way, a neighbor set up a fundraising page and North Augustans have rallied to the family’s aid, contributing over $8,462 as of Wednesday. The goal is $20,000. The link is: youcaring.com/amauriwilliams-869671

Doctors have told the family that they think Amauri picked up a virus years ago – “maybe strep throat, maybe just a cold,” his mother said, and it settled in his heart, silently doing the damage that led to its enlargement.

The scary thing is that a crisis like the one he suffered this summer could happen again.

“It could be brought on by a cold or something,” Hemingway said.

So after rehab, Amauri will need more treatment and to be watched closely by doctors. His mother was told that Johns Hopkins has a program that deals with Amauri’s condition, so they’re looking into going there after rehab.

“Maybe we can get him into a clinical trial or something,” Hemingway said.

Right now, it’s just one of many question marks in their future.

Reach James Folker at (706) 823-3338 or james.folker@augustachronicle.com.

If you want to help

A fundraising page for Amauri Williams and his family has been set up at youcaring.com/amauriwilliams-869671. The goal is $20,000.

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Thu, 11/23/2017 - 17:28

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