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Richard Engel posts hopeful update about son's strides against Rett syndrome

The NBC foreign correspondent's son, Henry, is making progress against a rare neurological disorder, according to Engel's wife, the family's "advocate, champion and cuddler-in-chief."
/ Source: TODAY

For Richard Engel’s son, even the smallest of steps can represent a leap in progress.

The chief foreign correspondent for NBC News retweeted some great news his wife shared about improvements their 2-year-old son, Henry, demonstrated at a recent speech and language therapy session.

“He’s getting the hang of drinking from a straw and continues practicing a low tech version of eyegaze (soon to go high tech in addition) Go H!!” wrote Engel’s wife, Mary Forrest, who cheered on her son’s progress in what she called a "proud mom post."

Earlier this year, Engel spoke publicly about Henry's rare genetic disorder "which doctors have told us will require him to have life-long care on the level of caring for a baby."

The condition, a variation of Rett syndrome, currently does not have a treatment or cure. But Henry attends daily physical and occupational therapy sessions, including several at a hospital, to help stimulate his senses.

Engel boasted about his wife, Henry's full-time care provider, in the tweet, in which he called her “the best Mom Henry could ever wish for. His advocate, champion and cuddler-in-chief.”

Engel opened up about the struggles of raising a child with special needs in an essay for TODAY.

“It can be lonely when you walk down the street and see parents with their ‘normal’ boys and girls skipping or scootering to school and knowing that your child's life, and yours, will never be like theirs,” he wrote.

“It can be lonely when you go to play groups and catch a glimpse of another parent noticing that something isn't quite right about your child, that he isn't walking or talking or sitting up straight, but not knowing what, if anything, to say.”

Richard Engel and son Henry, who has a variation of Rett syndrome.Courtesy of Richard Engel

Engel said he and his wife felt it was important to share their story to help raise awareness about genetic disorders and to let other families with special needs children know "that while it can feel lonely out there, they are not alone."

They also wanted to share hope about research being conducted on their son's disorder and his specific genetic mutation, which doctors have told the family is very rare.

"We're told Henry's condition is so rare that it could lead scientists to a treatment to transform Henry's life and the lives of many other children with severe genetic disorders," he said.