Savannah Guthrie wrote a note to her NBC colleague Richard Engel and his wife, Mary, following their six-year-old Henry’s loss, diagnosed with Rett Syndrome in 2017.
Considering their son’s battle with Rett syndrome, Savannah referred to Richard and Mary as “amazing warriors for Henry,” who’d been “pouring your love and care into him and fighting for him every day with everything you’ve got.”
“To me, you are the personification of what it means to be a parent,” wrote Today’s host on Aug. 18, “to love, adore, and delight in your child, and bring every ounce of your beings to their flourishing. You’re my heroes.”
Henry then received a message from her. “My dear Henry, you will be missed,” Savannah continued. “I will always remember the twinkle in your eye. We will keep fighting for you.”
A call was also made for donations to keep research into Rett syndrome going, noting that “much progress has been made because of him” and “others can and will be helped.”
Besides her message, Savannah posted throwback photos of Richard, Mary, and Henry on the Today show, one of which shows her holding Henry.
Henry, born in 2015, passed away on Aug. 9, according to his memorial page on the Texas Children’s Hospital’s Duncan Neurological Research Institute, where he’d been receiving care. His parents posted a statement on Twitter on Aug. 18 announcing his passing.
“He had the softest blue eyes, an easy smile, and a contagious giggle,” read a tweet shared to Richard’s account. “We always surrounded him with love, and he returned it, and so much more.”
Based on a reflection of Henry’s life, his memorial page stated he was diagnosed with Rett syndrome after undergoing a series of medical tests when his parents became concerned about his lack of developmental crossroads.
“A genetic test ultimately provided the answer: Henry had a mutation in his MECP2 gene,” according to his memorial page. “MECP2 mutations cause Rett syndrome, a disorder that typically affects girls after their first birthday, robbing them of learned skills and leaving them with cognitive deficits, loss of speech, and a variety of motor difficulties.”
In 2017, Henry was just two years old and diagnosed with Rett syndrome. Dr. Huda Zoghbi studied his genetic mutation at Texas Children’s Hospital.
Their condition Henry changed in May after suddenly “taken a turn for the worse.”
“His condition progressed, and he’s developed dystonia: uncontrolled shaking/ stiffness,” tweeted NBC News Chief Foreign Correspondent. “He was in the hospital for six weeks but is now home and getting love from brother Theo.”
Doctor Huda and her team continue researching and finding treatments for Rett syndrome, noting “they already are making significant progress with Henry’s own cells.” And Henry will always hold a special place in their hearts.
“Henry was special in so many ways,” Dr. Huda wrote in a post on the hospital’s Facebook page. “His loving and endearing smile, and the way he connected with his eyes, stole my heart from the time I met him. His quiet fight against this terrible disease was incredible. What is most amazing, however, is the impact Henry had on so many of us at the Duncan NRI and on our Rett research. We will continue to push as hard as possible to develop treatments. This is how we will honor his life.”