Family of Internet Sensation Raises Awareness for Hirschsprung’s Disease

Seven-year-old Johanna became an instant Internet sensation when her mother uploaded a video from the girl’s dance recital showcasing her sassy moves. The video has since received more than 20 million views. Though Johanna loves the warm response her video has garnered, she hopes to use her new-found celebrity to raise awareness for Hirschsprung’s disease, a painful gastrointestinal disorder affecting her beloved younger brother, CJ.

Hirschsprung’s disease is a congenital condition affecting the large intestine, which causes difficulties passing stool. It occurs when nerve cells in the colon fail to form completely, thus impacting the body’s ability to contract the muscles that move food through the bowels. The cause of the disorder is not clear, though it may be associated with a genetic mutation. Children with Hirschsprung’s are at greater risk of developing a serious and potentially life-threatening intestinal infection called enterocolitis, which is caused by blocked stool in the colon.

Related: Surprising causes of constipation

Symptoms of Hirschsprung's disease typically become apparent at birth, and include:

  • Lack of a bowel movement within 48 hours after birth
  • Swollen stomach
  • Vomiting
  • Constipation or gas
  • Diarrhea

In older children, symptoms also can include failure to gain weight and fatigue.

Related: Signs of a bowel obstruction

Hirschsprung’s typically is treated surgically in order to remove the portion of the colon lacking nerve cells and attaching the healthy portion of intestine to the rectum.

Related: Living without a colon

“It’s been absolutely heartbreaking to watch my son go through this,” Johanna’s mother, Elissa, says. “As long as CJ keeps on smiling and laughing and being happy watching his sister dance, she’ll keep dancing.”

Click below to hear more from Johanna and CJ’s family about living with the disorder, and watch a special live performance from Johanna!

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