NBC Reporter Opens Up About Son's Rare Disease

Kaitlynn Ely

NBC News chief foreign correspondent Richard Engel has traveled around the world, putting himself in dangerous positions and at the center of conflict.

His most demanding role, however, has taken place off-camera. He and his wife, Mary Forrest, support each other in raising their 2-year old son, Henry, a patient with Rett syndrome.

Henry was seemingly growing normally until his 1st birthday, when his parents noticed his development plateaued. When Henry was approaching his 2nd birthday, he was unable to clap his hands, walk, or sit up straight. The couple brought Henry for genetic testing.

This past Fall, Engel was in South Korea following U.S. troops when the genetic scan results arrived: “I called the doctor and he said, 'We found something. It’s very, very severe. It’s life-long, not treatable,’” Engel said in an interview on The TODAY Show. “I was in a state of shock. I got back into this convoy, shaking. It was the worst day of my life.”

Henry was diagnosed with Rett syndrome, a degenerative neurological disease that limits the development of language and motor skills. Patients will never be able to talk, walk, dress, or feed themselves without support. As they mature, patients will only ever have the mental capacity of a toddler, resulting in frequent temper tantrums, panic attacks, tremors, and the potential for seizures.

The condition is caused by a mutation in the MECP2 gene that is a part of the X-chromosome and controls brain function. Without it, a person is unable to control his or her mind. Typically, 1 in 10,000 girls will be diagnosed with this condition, as boys with the mutated gene typically either die in utero or shortly after their birth. Henry’s mutation was not severe enough to kill him, making him one of the only boys in the world with the disease.

Researchers believe that Henry may be the key to finding a cure for this rare disease. Dr. Huda Zoghbi, Henry’s doctor and director of the Duncan Neurological Research Institute at Baylor College of Medicine, has collected the boy’s cells to study Rett in mouse models, giving direction for the researchers. In the future, potential gene therapy may be the cure to Rett syndrome.
 “Henry's mutation is unique in the world. But because it's unique is what makes it so valuable,” said Dr. Zoghbi, “Sometimes from the rarest thing, you can learn the most.”

For Engel and his wife, each moment is an opportunity for Henry to work on his motor skills. Every day, Henry receives physical therapy, and twice a week, Forrest and Henry son visit the hospital to help stimulate his senses.

There are currently no medications or treatment regimens for patients with Rett syndrome. The physical therapy and activities Henry receives to work on his motor skills is tailored toward his weaknesses.

In the meantime, it’s a waiting game for the Engel family and so many others affected by Rett syndrome. Dr. Zoghbi concluded in the interview, “I think the technology, and the genetic approaches, and everything that’s available, empowers us. It’s hard to say we’re close. We’re just starting. We have to do the work.”
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