Today co-anchors Savannah Guthrie and Hoda Kotb have paid heart-wrenching tributes to their colleague Richard Engel’s six-year-old son Henry, who died after a years-long battle with an incurable neurological disorder.
The NBC News chief foreign correspondent’s oldest son had Rett Syndrome, a genetic mutation that leads to severe cognitive deficits and physical impairment. The condition is rare, even more so in boys, and there is no cure.
Engel, 48, announced Henry’s death in a joint statement with his wife, Mary Forrest, on Twitter Thursday. He passed away on August 9, according to a memorial page on the Texas Children’s Hospital website.
Savannah Guthrie, 50, penned a heart-wrenching tribute to Richard Engel’s six-year-old son Henry, who died following a years-long battle with Rett Syndrome, an incurable brain disorder
Guthrie praised Engel and his wife, Mary Forrest, for being ‘amazing warriors’ for their son, saying they are ‘the personification of what it means to be a parent’
The Today co-anchor encouraged people to make donations to Texas Children’s Hospital in support of its Rett Syndrome research
After the heartbreaking news was made public, Guthrie, 50, penned an emotional tribute to Henry and his parents on Instagram, saying they are her ‘heroes.’
The co-anchor posted pictures of Henry on the Today show with Engel and Forrest, including a sweet image of herself holding him backstage.
‘Dearest Richard and Mary, you were amazing warriors for Henry — 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 — to love, adore, and delight in your child, and bring every ounce of your beings to their flourishing. You’re my heroes,’ she wrote.
Guthrie also shared a message for Henry and encouraged people to make donations to Texas Children’s Hospital in support of its Rett Syndrome research.
Guthrie also shared a message for Henry, writing on Instagram: ‘I will always remember the twinkle in your eye’
‘My dear Henry, you will be missed. I will always remember the twinkle in your eye. We will keep fighting for you. Donate here to keep Henry’s research going — much progress has been made because of him. Others can and will be helped,’ she concluded, including a link to the donation page.
Kotb, 58, honored Engel’s late son on the Today show on Friday, saying: At such a young age, Henry Engel carried that fighting spirit.’
She emotionally recounted how Engel and Forest shared their son’s journey with the world ‘hoping to spread awareness toward finding a cure.’
‘During his life, Henry touched so many and left a legacy that will carry on,’ she said, adding: ‘All of us are sending our love to Richard, to Mary, and to [their son] Theo.’
Hoda Kotb, 58, paid tribute to Henry on the Today show on Friday, recalling how he ‘carried that fighting spirit’
The Today co-anchor emotionally recounted how Engel and Forest shared their son’s journey with the world ‘hoping to spread awareness toward finding a cure’
‘So many people watching our show see Richard standing in a very dangerous place covering something, unaware that at home, he was fighting what is the biggest battle,’ she said
‘So many people watching our show see Richard standing in a very dangerous place covering something, unaware that at home, he was fighting what is the biggest battle,’ she explained.
Engel went public with the news of Henry’s death on Thursday while sharing memories of his late son.
‘Our beloved son Henry passed away. He had the softest blue eyes, an easy smile and a contagious giggle. We always surrounded him with love and he returned it, and so much more. Mary and Richard,’ he wrote on Twitter.
Engel, who also has a three-year-old son Theo, encouraged those who want to honor Henry’s memory to make a contribution to the Texas Children’s Hospital.
Engle announced that Henry had died on Thursday. Henry passed away on August 9, according to a memorial page on the Texas Children’s Hospital website
Engel shared the heartbreaking news in a joint statement with his wife on Twitter
The couple encouraged those who want to honor Henry’s memory to donate to the hospital’s Rett Syndrome research
‘Researchers are making amazing progress using Henry’s cells to help cure RETT Syndrome so others don’t have to endure this terrible disease,’ he added in a follow-up tweet.
Within hours Engel’s post received more than 18,000 comments from people offering their condolences, including celebrities, fellow journalists, and his NBC colleagues.
‘Oh Richard….. I am so so so sorry. My heart aches for you and your family. We love you,’ wrote Kotb, while weather anchor Al Roker added: ‘What a strong little man who touched every one who witnesses his bravery.’
‘I’m so sorry for your painful loss and he was blessed to have you as parents,’ actress Rosanna Arquette shared.
Within hours Engel’s post received more than 18,000 comments from people offering their condolences
Rosanna Arquette, Al Roker, Geraldo Rivera, and Maureen McCormick were among the celebrities and journalists who sent their love during this difficult time
‘We are all heartbroken, Richard and also have been and continue to be inspired by your love and devotion,’ MSNBC host Chris Hayes responded.
TV personality Piers Morgan commented: ‘How incredibly sad. My deepest condolences to you and all your family.’
The post also inspired others to share photos and pay tribute to the children they have lost over the years while sending Engel’s family love during this difficult time.
Henry’s death comes just a few months ago after Engel shared that his oldest son had spent six weeks in the hospital.
A few months ago, the NBC News chief foreign correspondent shared that his oldest son had developed dystonia, which is characterized by involuntary muscle contractions and stiffness
Engel shared a video of his three-year-old son Theo lying in bed with his big brother
Theo sweetly leaned over and gave Henry a kiss on the forehead while he was lying down
‘His condition progressed and he’s developed dystonia: uncontrolled shaking/ stiffness,’ he explained on Twitter. ‘He was in the hospital for 6 weeks, but is now home and getting love from brother Theo.’
In the heartwarming clip, Thee gives his older brother Henry a sweet kiss on the forehead while he is lying down.
Shortly after sharing the update, Engel returned to Twitter to post a photo of Henry sitting up in a chair, writing, ‘Thank you everyone for all the kind messages, from Henry, our Mr. Handsome.’
Engel and Forrest have been candid about Henry’s medical journey following his diagnosis of Rett Syndrome in 2017.
The mutation stops the brain from growing properly, and according to WebMD, symptoms include slowed growth, issues with hand movements, a lack of language skills, problems with muscles and coordination, and trouble breathing.
So far, the treatments for the incurable condition are mostly limited to various forms of therapy, like physical therapy, speech therapy, and behavioral therapy.
In 2018, Engel and Forrest brought Henry to the Texas Children’s Hospital’s Duncan Neurological Research Institute (Duncan NRI), where doctors studied his cells in an effort to one day make a medical breakthrough.
‘It’s not just delay. It means lifelong, permanent, untreatable physical and intellectual impairment,’ Engel said on the Today show that year. ‘Unfortunately, the more we learned about it, the worse the news got.’
They were told their son would likely never be able to walk, talk, dress himself, or have the mental capacity beyond a toddler.
Henry was three and a half years old when he said ‘Dada’ for the first time, a milestone that Engel wrote about in an essay for Today.
‘To parents with typically developing children, a little Dada may not seem like a big deal,’ he explained. ‘But for me it was a validation, an acknowledgment that he’s in there, knows me, knows that his mother and I are forces for good in his life, and above all, that he loves us.’
Engel and Forrest welcomed their son Theo in 2019, and the dad admitted that it was difficult to know that their baby boy would soon pass Henry’s developmental milestones.
‘You hold a baby like Theo and he’s wriggling. His muscles are moving. When he is upset, he screams with his whole body and kicks his legs with power. It’s something we never saw with Henry,’ Engel told People in 2019.
Their oldest son had started having seizures that year, and they were trying to manage his compulsive repetitive motion, which had become more pronounced.
Engel and Forrest had to watch Henry constantly and stop him from putting his hands in his mouth and scratching his eyes because he could have hurt himself.
Engel and his wife have been candid about Henry’s medical journey
Henry, pictured as a baby, was diagnosed with Rett Syndrome in 2017. The genetic mutation leads to severe cognitive deficits and physical impairment
‘We’re hoping, in a few years, we can start a treatment that is still being invented,’ he told People at the time.
‘The problem is, while we wait [for a treatment], things deteriorate,’ he added. ‘The body starts to go, the hips start to go … the spine hasn’t been an issue, but it could be. We’re in a race against the clock no matter how much physical therapy we do, and we do a ton.’
In 2020, Engel wrote an essay for Today about how the COVID-19 pandemic had been a ‘nightmare’ for his son who had been cut off from the therapies that had enriched his life.
Before the pandemic, Henry was enrolled in a number of therapies that stimulated him and brought him joy, including equine therapy.
Henry could only interact through ‘sight, sound, and touch,’ so Engel and Forrest constantly cuddled him, praised him, massaged him, and gave him kisses
Engel and Forrest welcomed their son Theo in 2019, and the dad told People at the time that it was difficult to know that their baby boy would soon pass Henry’s developmental milestones
He rode a horse named Coco with the help of two attendants, and not only did Henry visibly enjoy the rides, but the rocking movement helped strengthen his core.
‘He did astronaut therapy in a soft-play room, spinning on a large Lazy Susan to let him feel a mild centrifugal force,’ Engel shared.
‘He did music therapy and enjoyed touching the vibrating guitar strings. He did hydrotherapy in a warm pool with hoists attached to the deck. He went to a school, for a few hours a day, with an aide who helped him.’
The dad explained that without therapy, Henry was ‘bored’ and ‘whiny.’ He could only interact through ‘sight, sound, and touch,’ so they constantly cuddled him, praised him, massaged him, and gave him kisses.
A large part of Henry’s daily routine was physical therapy because movement was essential for him to build strength
But despite their efforts, they still noticed a ‘deterioration in Henry’s overall condition.’ Since the start of the pandemic, his tremors and body shakes had become more pronounced.
His hand-mouthing had also become more frequent, and they had to either put his arms in braces or socks over his hands to keep him from chewing his skin until it bled. They weren’t sure if these symptoms were due to stress or just the progression of his condition.
Engel and Forrest made the decision to hire a physical therapist to work with Henry during the pandemic because movement is essential for him to build strength.
Despite their struggles amid the pandemic, they considered themselves lucky to be able to afford private physical therapy and equipment to help their son.
Engel estimated that they had about $5,000 to $10,000 worth of equipment for Henry in their London home, noting that some of it was provided by local authorities.
Henry was cut off from the therapies that enriched his life early on in the COVID-19 pandemic, and his parents noticed that his overall condition had deteriorated during that difficult time
Engel and Forrest made the decision to hire a private physical therapist for Henry to make sure she didn’t lose any more of his strength
‘That’s why I say we’re lucky. Other families can’t afford to turn their homes into therapy gyms, and not all community support is strong,’ he said.
‘Without physical therapy Henry’s body would deteriorate, collapsing under its increasing weight.’
Dr. Huda Zoghbi, the founding director of Duncan NRI, released a statement honoring Henry after the news of his passing was made public.
‘Henry was special in so many ways. 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,’ he said.
‘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.’