‘God’s Gonna Heal My Blood’: Saraland Youth Pastor Ethan Blackwell Fights Rare Infection at NIH

SARALAND, Ala. — When Ethan Blackwell was not quite 3 years old, he looked up at his mother as she got ready to take him to yet another doctor’s appointment and told her he didn’t want to go.

“God’s gonna heal my blood,” the little boy said.

Heather Blackwell grinned at the time. Two decades later, sitting beside her 23-year-old son’s hospital bed at the National Institutes of Health in Bethesda, Maryland, those words came back to her as he fought a rare and dangerous bacterial infection that has drawn the attention of some of the world’s leading immune system experts.

A lifelong rare disease

Ethan, of Saraland, was diagnosed at just 3 months old with chronic granulomatous disease, or CGD. It is a rare primary immunodeficiency disorder in which phagocytes, a type of white blood cell, fail to produce the reactive oxygen compounds the body needs to destroy certain bacteria and fungi.

The result is that, for his entire life, Ethan has been prone to bacterial and fungal infections that a healthy immune system would normally fight off.

Only an estimated 30,000 to 40,000 people in the world live with CGD. The disease is usually inherited and is typically diagnosed in childhood. People with CGD generally take daily preventive medications to lower their risk of infection, and they must be careful about exposures that most people never think about, such as gardening soil, mulch, hay and decaying plant material, which can carry fungi and bacteria.

Dr. Christa Zerbe, a senior clinician in the Laboratory of Clinical Immunology at the National Institutes of Health, has cared for Ethan since he was 9 years old. She said that while CGD changes a person’s life, people with the condition can live full lives.

“Ethan has needed to be more mindful to take his medications every day to prevent very specific infections, but he is living a full life,” Zerbe said. “Additionally, Ethan gets out of lawn maintenance, renovations and mulching for free!”

‘Everybody’s friend’

Those who grew up with Ethan describe a cheerful, easygoing young man who rarely talked about his health.

“I’ve known Ethan since the 7th grade,” said Karleigh Sullivan of Gordo, who grew up with him at Restoration Church in Citronelle. “Ethan was always a happy kid. Always smiling, everybody’s friend.”

“Ethan never talked much about what he was going through,” she added. “In fact, it was years after I met him when I found out about his health issues.”

His father, John Blackwell, is a longtime pastor and currently serves as lead pastor at Restoration Church. He said CGD limited some of what Ethan could do, but it did not stop him.

“Ethan was limited in what he could do because of his CGD,” John Blackwell said. “Ethan played some basketball growing up. He played soccer his senior year at Saraland High School.

“He also was and is a fantastic guitar player. For years he loved hard rock, from Guns N’ Roses to Van Halen.”

From hard rock to the pulpit

Pastor John admits he was never too keen on the hard rock riffs coming from his son’s bedroom. He would rather have heard praise music. But he and Heather encouraged Ethan’s love of music, glad he had found an outlet that freed him from worry.

John and Heather raised Ethan, along with his younger siblings Jonah and Kara Beth, in a home centered on family and faith. Ethan came to know Christ when he was 13.

“Ethan surrendered to the ministry when he was 17,” his father said.

About 10 months ago, Ethan came to his father with tears in his eyes and said, “I’m all in, Dad.” Christian songs began coming from his guitar. And this past August, Ethan landed a job he was thrilled about: he was named youth pastor at Shiloh Baptist Church in Saraland.

It was shaping up to be a wonderful autumn.

Labor Day weekend changes everything

On Sept. 5, Ethan developed chest pain, and a fever followed. Over the next week he was home on and off because of the illness. On Sept. 12, he was admitted to a hospital in Mobile. By Sept. 28, he had been transferred to the National Institutes of Health in Bethesda.

“It started as pneumonia and spread to the blood,” Heather said. “Once the germ entered Ethan’s blood, doctors at the NIH were faced with finding the germ and identifying it. Ethan’s immune system basically attacked itself.”

He went downhill quickly: sepsis, then blood in his lungs. Organ failure followed. Ethan’s liver and kidneys stopped working, and he was placed on kidney dialysis.

One of only three known cases

Doctors identified the infection as Granulibacter bethesdensis, a bacterium first described by researchers at the NIH and named after Bethesda. It is believed that only three people in the United States, Ethan included, have been infected with this organism.

“This current infection has only been known to cause disease in CGD patients,” Zerbe said. “Described first at the NIH, this infection has only caused severe infection in two patients reported in U.S. literature.

“Ethan makes three.”

Because so few cases have ever been documented, Zerbe and her colleagues have been treating Ethan while also learning from him. He is currently receiving five antibiotics as the NIH team works to find the most effective combination.

The NIH Clinical Center in Bethesda is the largest hospital in the world devoted entirely to clinical research. Patients with rare diseases, including CGD, are often treated there as part of research studies that help doctors better understand and treat their conditions.

‘Please, take care of my mom and my dad’

Last Monday, doctors determined Ethan needed to be placed on a ventilator. Unsure whether he would wake up, Ethan whispered to the doctors and nurses around him: “Please, take care of my mom and my dad.”

His parents teared up.

“Saying that when he was about to be intubated reminded us what a special son Ethan is,” Heather said.

It was a long week for the Blackwells.

“I worry more at night,” Heather said. “It seems Ethan struggles a bit more at that time. I’ve been faithful in my prayers and I’ve tried to walk in my faith, but I also find myself holding my breath a lot.”

A victory, and a long road

Last Wednesday brought a victory. The ventilator was removed. Doctors found no bleeding in Ethan’s lungs, and his liver appeared to have bounced back.

Through his parents, Ethan shared his gratitude for his doctor.

“I can’t express how thankful I am for Dr. Zerbe and her care. Just the amount of trust I have in her. She’s done such a phenomenal job and she’s such a phenomenal physician.”

Zerbe, in turn, credited Ethan’s support system.

“Ethan has been remarkable because of his support and his faith,” she said. “It makes a huge difference when a patient has social and emotional support. His family and his faith have been the bedrock of his foundation.”

Ethan still has a long way to go. He remains in kidney failure and continues on dialysis, and he faces months of antibiotic therapy and follow-up visits with his doctors.

“We got Ethan sitting up in a chair,” Heather said a few days ago. Baby steps, indeed.

Four principles

As their son continues to fight, John and Heather say their faith remains strong. Pastor John has asked his son to live by four principles:

• “You do what you can do.”
• “We will do what we can do.”
• “They (the doctors) will do what they can do.”
• “He will do what He does.”

The Blackwells believe God is using this trial for His testimony. But they are honest that it has been hard.

“I still struggle with how we got here,” Heather said. “I thought it would be a quick turnaround at NIH and Ethan would be on his way, but here we are.”

A father who has been here before

Even pastors face moments that test them. John Blackwell has faced loss before, in ways that make the uncertainty of his son’s illness especially heavy.

“I received a call during church service back in 2020,” he said. “It was a relative telling me my father had passed. I rushed to Mississippi. I never did see him before he died. Three years later to the day, I was in church when I learned my mother had fallen and was on life support. I never had a chance to tell her goodbye, either.”

The family is doing its best to stay calm in the middle of the worry.

“I don’t want to be led by my emotions,” John said. “I want God to lead me. We know the name Ethan means ‘strong’ in Hebrew. We are certain Ethan will someday walk out of this hospital.”

‘Tell the folks I’m very thankful’

Ethan is not out of the woods, but he can see sunlight through the trees. He asked his mother to share a message with everyone who has been following his story and praying for him:

“Tell the folks I’m very thankful for all the support I’ve received from everyone through [social media] and the people I’ve come across in the hospital rooms. I’m overall grateful, thankful and honored for everyone who is supporting me.”

Back to the beginning

Days ago, Heather sat in Ethan’s room at the NIH as he battled sepsis, with doctors and nurses tending to him and a nurse drawing his blood. Then a cousin sent her a timely, prayerful text that took her back 20 years.

She closed her eyes and saw her sweet toddler looking up at her with a smile.

“I don’t need to go to the doctor, mama. God’s gonna heal my blood.”

Heather never imagined she would one day be repeating her son’s words to herself, in October 2026, to hold on to what he seemed to know all along.

“God is going to heal our son’s blood,” she said.

Her voice was strong and hopeful.

About chronic granulomatous disease

• What it is: A rare inherited primary immunodeficiency in which certain white blood cells cannot produce the compounds needed to kill some bacteria and fungi.
• How common: An estimated 30,000 to 40,000 people worldwide.
• Effects: Repeated or severe bacterial and fungal infections, often involving the lungs, skin, lymph nodes and liver.
• Management: Daily preventive antibiotics and antifungal medicines, careful avoidance of certain exposures and close care from specialists.
• Ethan’s infection: Granulibacter bethesdensis, first described at the NIH and known to cause severe disease only in people with CGD.