6-Year-Old Antwain Fowler Dies—He Had a Rare Autoimmune EnteropathyCondition

Kids can be incredibly funny and endearing to our hearts without even trying. Their innocence and way of saying things can have us rolling on the floor. And, when they are ill or hurt we hurt right along with them. Sometimes the illness is something we can fix like a cold or fever. Other times, however, it's something we have no control over like an autoimmune disease.

Antwain's Story

A 6-year-old boy who went viral on YouTube in 2019 has died. Antwain Fowler became an internet star with a four-second clip where he simply said, "Where we about to eat at?" Since then, cheery videos of Fowler dancing and smiling have repeatedly earned plenty of likes on Instagram.

Fowler's cause of death hasn't been revealed, but he did have a condition known as autoimmune enteropathy, a disorder that kept his body from properly absorbing nutrients. Fowler's mother, China, revealed the news of her son's passing on Instagram the same day.

"The pain in my heart is like no other Why God," she wrote in one post. "Never in a million years. My heart is out [of] my chest!!!!"

China shared another post that featured a picture of herself and her son in a hospital bed, goofing off for the camera.

"I tried hiding you from the world early on but couldn't; you were meant to be seen," she wrote in the caption. "My precious babyyyyy🥺 my god I just cannot believe it this is unbelievable man I'm tryin soooooo hard so so hard but I can't dodge the feeling… God you really did a number on me I didn't deserve to be left empty like this. A huge whole in my heart😢 the strength I had left with you baby. Still haven't grasped the fact that you actually left me. Baby🥺 come back I need you."

Diagnosed with Autoimmune Enteropathy

According to a GoFundMe set up by Fowler's mom before his death, Fowler was diagnosed with autoimmune enteropathy in July 2015. "Antwain has been hospitalized a countless number of times due to his poor health condition," she wrote in the GoFundMe post. "Antwain has undergone over 25 surgeries." She also noted that Antwain was "unable to drink milk or eat solid foods during his earlier childhood."

While he had been "progressively healing," the post explained that Fowler had a setback in his recovery when he had surgery to remove a port, which is a small medical device inserted beneath the skin. Fowler developed pneumonia after the surgery and needed to have a tracheotomy in his throat to help him breathe. The complication also weakened his muscles.

An update that was shared on the GoFundMe as a video from November 14, shows a cheerful Fowler teaching people how to do karate while seated. "Now you know," he said with a smile, after demonstrating a series of moves.

The GoFundMe did point out that "the first four years of Antwain's life was an everlasting fight" because of his autoimmune enteropathy and that he had complications in the years since, including with the port.

What Is Autoimmune Enteropathy?

Autoimmune enteropathy is a rare condition that impacts a child's ability to absorb nutrients. It occurs when certain cells in the intestines are destroyed by a person's immune system. In fact, the word "enteropathy" itself refers to a disease of the intestine, particularly the small intestine.

One of the main features of the disease is that it causes severe diarrhea. The diarrhea is intractable—meaning it's hard to manage—and often leads to malnutrition. Diarrhea also won't let up even with dietary changes, such as going gluten-free, so many people with autoimmune enteropathy will need parenteral nutrition.

"Parenteral nutrition... is the medical term for infusing a specialized form of food through a vein (intravenously). The goal of the treatment is to correct or prevent malnutrition."

Autoimmune enteropathy can be restricted to the bowel or intestines or can also impact other parts of the body, including the endocrine, renal, pulmonary, liver, hematologic, and musculoskeletal systems.

How Common Is It?

Autoimmune enteropathy is not very common. Cincinnati Children's Hospital Medical Center calls it a "very rare condition" among children in the US. One older study says it happens in less than one in 100,000 infants.

It's even rarer in adults. One study from the Mayo Clinic says the medical center had only seen 11 adults with the condition during the study period of May 2001 to June 2006.

Symptoms

Autoimmune enteropathy typically begins in the first few months of life. During that time, a baby might experience a failure to gain weight or a failure to grow at the expected rate—aka, failure to thrive—as well as a general wasting and weight loss, together known as cachexia.

The symptoms of autoimmune enteropathy can be "quite debilitating."

Symptoms can include:

• Diarrhea/loose watery stools all the time
• Poor weight gain and weight loss
• Decreased urine output
• Frequent infections
• Occasional blood in the stool
• Skin rash

The degree of symptoms, as well as the amount of gastrointestinal involvement and systemic manifestations—so, what other systems the disease affects)—can all play a part in the "varied prognosis" of the disease.

Treatment

"In our experience, treatment is challenging." The treatment typically addresses both the need for nutritional support and immune suppression. Autoimmune enteropathy is usually treated by medications that suppress the immune system. Children may also need to go on a special diet or get IV nutrition to help them get the nutrients their body needs and to allow the intestines to heal.