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Angwin’s Ethan Jeffcoat, 17, dies after suffering from a rare, genetic brain disease

Angwin’s Ethan Jeffcoat, 17, dies after suffering from a rare, genetic brain disease

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Surrounded by his family, Angwin resident Ethan Jeffcoat, 17, died shortly after 3 p.m. on Thursday, April 9 at his mother’s home.

Ethan, who at age 9 was diagnosed with the rare genetic brain disease Adrenoleukodystrophy (ALD), was in a hospital bed that had been moved to the front room. With him were his mother, Robyn, his father, Daryl, and his two brothers, Grant, 24, and Wyatt, 22, who are both currently out of work.

Robyn said, “We played music for him and the last movie he watched was ‘The Greatest Showman.’ He made it through the whole movie, it ended and 20 minutes later he was gone. We didn’t even know it was happening. We just looked over at him and his lips started turning white. Daryl listened and heard his heart’s last thump and that was it.”

Daryl added his youngest son passed peacefully.

“We were all standing right there, he was in no pain at the time, it was just a very relaxed transition for him, which gives us some peace, because the last six months to a year were just brutal on him. He was ready to go and he was ready for us to let him go.”

Ethan was down to skin and bones and because his body couldn’t digest food anymore – even Pedialyte – he was losing weight. His mother said his body was shutting down and in the days before his death, family members came, wearing masks to say goodbye. “You could tell he was tired and he was just done,” she said.

Days after his death, family friend Erika Mueller began a GoFundMe campaign seeking to raise $10,000 to pay for cremation and a headstone. As of Friday, 59 donors had contributed $6,647.

Public celebration planned

A private family memorial will be held, with a planned public celebration of Ethan’s life sometime this fall. Because of the shelter-in-place orders, the public celebration will have to wait until those sanctions are lifted, Daryl said. He envisions a party with 300, 400 or 500 people. “The community obviously will be involved – they’ve been such a huge support” for Ethan and the family. Originally, they thought the bash should be on Ethan’s birthday in August, but because of the current coronavirus pandemic, they decided to wait to pick a date.

In the days before Ethan’s death, Robyn said the Rev. Amy Denney-Zuniga, rector of St. Helena’s Grace Episcopal Church, had come to her home and offered a prayer for Ethan. The Rev. William “Father Mac” McIlmoyl, the former rector of Grace Church, also had called and offered a prayer, she added.

Ethan liked to attend church at Grace, although it had probably been at least five years since Robyn and his brothers brought him in a wheelchair. Robyn said, “He would always say, let’s go to church and get some ‘body’ and ‘blood.’ (Holy Eucharist.) It was so funny. He loved church, he loved life, he was just such a happy kid, all the time.”

Ethan’s zest for life

Daryl, too, remembers his son’s zest for life. “I think Ethan had a very unique energy about him. He was just a very bright kid. I don’t know how to explain it. He just exuded a good vibe all the time. He had his moments, of course, but overall, I think he had a great demeanor all around, he just seemed to put a smile on anyone’s face.”

Doctors diagnosed Ethan with ALD when he was 9 years old. Daryl said the St. Helena community has been so supportive of the family, in part, “because a lot of people knew Ethan” before the diagnosis. At the time, doctors gave Ethan six months to a year to live – two years at the most. But, Ethan was a fighter and lived almost eight years after the diagnosis.

Daryl said his son “would pull through some of the most extraordinary health circumstances that most people wouldn’t be able to get out of,” including fighting off a bout of pneumonia. “He was so resilient,” Daryl said. “His mom and I and my other boys flooded him with love. I think that’s the biggest thing, that he was hanging onto. He knew we were there, we loved him and we cared for him every day,” he added. Daryl has spent the past 28 years as a mail carrier in St. Helena and spent the past eight working for the St. Helena Fire Department.

Robyn, though, remembers it differently, saying Ethan was healthy during the eight years she took care of him. “Not once did he get sick,” she said. “He never got a cold, the flu, pneumonia, he was healthy the entire time. We were very, very protective of him and it worked.”

Remembering Ethan

Robyn said she’d like it if people remembered her son “as that spunky little kid that smiled, loved to entertain people and tell jokes. He loved to play jokes on people and he loved to make people smile and laugh. He just had this amazing energy.”

When he was first diagnosed and for a few years after, Robyn made sure to take Ethan and his brothers everywhere: to Maui, twice to Florida, to Disneyland and Universal Studios and to Santa Cruz. “Right at the beginning, we just traveled everywhere with him. And did everything that he loved to do while he could still enjoy it,” she said.

Grant & Wyatt

You may have read about the Jeffcoat family in the past in the St. Helena Star. Since Ethan was diagnosed with ALD, his brothers were tested and both have the genetic disease, passed from their mother.

Grant, 24, was working at the Farmhouse Inn in Forestville before he was laid off. He is asymptomatic and takes steroids for his adrenal gland dysfunction, his father said.

Wyatt, 22, was working in the parts department at a Santa Rosa Chevrolet dealer before he was laid off. Originally, he was doing mechanics work but medical staff told him he could no longer do that work because of the possibility of cuts and resulting infections. Daryl said the two boys are together, “trying to figure out what comes next.”

In June 2018, doctors treated Wyatt’s ALD with a stem cell implant, designed to stop the progression of the disease in his brain. It was “totally successful,” Daryl said, although time is needed for Wyatt’s immune system to rebuild itself, since chemotherapy was used to kill it before the stem cells were implanted. “He’s got the right markers for his immunity growing,” but Wyatt is still easily susceptible to infection, Daryl said.

This month, Wyatt is scheduled for his yearly checkup at Stanford’s Lucille Packard Children’s Hospital, which includes an MRI and two or three days of tests. Robyn said this year, she’s glad she will get to go with Wyatt to all of these appointments, “because I have the freedom now to be able to do that.”

Two years ago, after the stem cell implant, Daryl, Robyn and Grant were taking turns caring for both Ethan in Angwin and Wyatt in Palo Alto. The schedule was brutal, because they were 200 miles apart and needed care 24 hours a day, seven days a week. Daryl said it was a crazy time, but added, “It worked out, but it was a very trying schedule.”

For this reporter, I want to remember Ethan as he appears in a photograph. He is a boy of 8 or 9, wearing a white, long-sleeved shirt, buttoned at the collar with a dark tie that is askew. Looking out at the camera, he has a lovely smile, rosy cheeks and a cheeriness in his dark eyes. He’s not yet in a wheelchair and I imagine he’s about to tell a joke, to make me laugh, to ease my pain. Goodbye, Ethan. You’ll not be forgotten anytime soon.

You may reach David Stoneberg at 967-6800 or editor@sthelenastar.com

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St. Helena Star Editor

David Stoneberg is the editor of the St. Helena Star, an award-winning weekly newspaper. Prior to joining the Star in 2006, he worked for the Lake County Record-Bee, the Clear Lake Observer American, the Middletown Times Star and The Weekly Calistogan.

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