The foreign correspondent and his wife, Mary, revealed the daily battle they face due to their young son's rare condition.
NBC chief foreign correspondent Richard Engel is opening up about his 2-year-old son, Henry’s, battle with Rett Syndrome.
Appearing on Today with his wife, Mary, and Henry, the reporter shared the heartache of seeing his precious son live with the debilitating disorder, in the hope of raising awareness of the condition.
While little Henry was “born the sweetest and happiest boy,” he failed to grow and develop as he should -- unable to walk or clap his hands. After visiting multiple doctors and specialists, a scan revealed that Henry suffered a genetic condition known as Rett Syndrome in girls, but rare and, so far, untreatable in boys.
The condition means he is not expected to ever walk or dress himself, develop mental capacity beyond that of a toddler and requires daily physiotherapy, as well as twice-weekly hospital visits.
“It can feel very lonely when you go down the street and you see other children behaving normally and knowing that his life and our lives are never going to be like that,” Richard said.
Mary agreed that it’s difficult watching toddlers who are only nine months old do things Henry is unable to do.
“It’s raw and painful and very personal, but hopefully other people will see this and feel a little less alone and we will too,” she said, explaining the couple decided to talk about the condition publicly.
Despite the daily struggles, the couple noted the positive aspects of Henry’s battle. Doctors are currently attempting to develop treatment, and if they succeed, it could help patients suffering from other genetic conditions.
Richard said the challenge has also helped create a stronger bond with Mary.
“It’s made our relationship stronger,” he said. “We’re all we’ve got, we’re all he’s got right now, so we need to be a team.”
If you wish to help the family and learn more, visit: https://www.duncannri.org
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