6-Year-Old Viral Video Star With Autoimmune Enteropathy Dies: 'The Pain in My Heart Is Like No Other,' Mom Says

0
2878

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 November 21 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 my chest!!!!"

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

RELATED: 8-Year-Old Boy Dies 1 Day After Going Home Sick and Having No Previous Symptoms

"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."

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.

The last update shared on the GoFundMe was a video from November 14, which showed 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.

Again, no official cause of death has been announced, but 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.

But what exactly is autoimmune enteropathy? Here's what you need to know.

RELATED: What Is Celiac Disease Rash? Here's What You Should Know About the Itchy Condition

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, per Medline Plus. 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. The diarrhea also won't let up even with dietary changes, such as by 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 Mayo Clinic explains. "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, according to a review of the disease that Mayo Clinic clinicians wrote.

How common is autoimmune enteropathy?

Not very. 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 more rare 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.

RELATED: The 4 Best Diets to Try If You Have an Autoimmune Disease

What are the symptoms of autoimmune enteropathy?

Autoimmune enteropathy typically begins in the first few months of life, according to Medline Plus. 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.

Authors of the Mayo Clinic review say that the symptoms of autoimmune enteropathy can be "quite debilitating."

According to the Cincinnati Children's Hospital Medical Center, 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, according to Mayo Clinic researchers.

How is autoimmune enteropathy treated?

"In our experience, treatment is challenging," the Mayo Clinic clinicians wrote. 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.

To get our top stories delivered to your inbox, sign up for the Healthy Living newsletter