NBC News chief foreign correspondent Richard Engel excitedly celebrated his youngest son’s first steps this Labor Day weekend.
The 46-year-old took to Twitter on Monday to share video of the happy moment, catching the whole family cheering one-year-old Theo on as he toddled across the room.
‘And this happened today! Baby steps. Go Theo! Henry and @MaryKForrest cheering on,’ he wrote.
Ta-da! NBC News chief foreign correspondent Richard Engel excitedly celebrated his youngest son’s first steps this Labor Day weekend
Woohoo! The 46-year-old took to Twitter on Monday to share video of the happy moment, catching the whole family cheering one-year-old Theo on as he toddled across the room
The video shows the whole family is around for the occasion, with toys scattered around the room.
Engel helps Theo on the ‘start’ side, assisting the tot into a standing position in his diaper and green onesie.
He lets go as Theo takes a few unsteady steps, but the baby makes it all the way across to his mother, Mary Forrest, siting a few feet away with four-year-old Henry in her lap.
When Theo makes it to his mom, she wraps her arms around him in a hug, holding Henry’s arm so he hugs his brother, too.
Family time! The video shows the whole family is around for the occasion
He lets go as Theo takes a few unsteady steps, but the baby makes it all the way across to his mother, Mary Forrest, siting a few feet away with four-year-old Henry in her lap
When Theo makes it to his mom, she wraps her arms around him in a hug, and Engel comes in for a kiss on the head
‘And this happened today! Baby steps. Go Theo! Henry and @MaryKForrest cheering on,’ Engel wrote
In addition to plenty of cheers and applause from his family, little Theo was also congratulated on Twitter, where thousands of viewers liked the video.
‘That’s awesome. Glad you were able to be home to witness this important milestone with your wife & children,’ wrote one.
‘How wonderful to see such an incredible moment,’ wrote another.
Theo just celebrated his first birthday last month, marking one year since Engel proudly announced his birth in 2019.
‘He’s healthy, happy (unless you unwrap his swaddle), and thirsty. We couldn’t be more in love. And now Henry is a big brother, too,’ he said at the time.
‘Life has twists, turns and new beginnings. This is Theo’s first chapter, and a new one for our family. We’re excited, nervous, and thankful,’ he said.
Family of four: Engel and his wife have two children: Theo and Henry, who turns five this month
Struggles: Henry suffers from Rett Syndrome, a genetic mutation that leads to severe cognitive deficits and physical impairment.
Engel has also celebrated milestones for his older son, Henry, who turns five this month.
Henry suffers from 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.
The pandemic has been particularly hard on the little boy, and last month Engel published an essay on Today about how Henry’s condition has deteriorated this year.
‘Henry has severe special needs, and COVID has been an absolute nightmare for him and millions of other children like him. I’d add more colorful adjectives, but you get the point,’ he wrote.
‘Henry, who turns 5 in September, doesn’t walk or talk. He can’t feed himself efficiently. He doesn’t sit up straight. Now that he’s getting bigger, he can barely move independently.’
Before the pandemic, Henry was enrolled in a number of ‘amazing therapies’ that stimulated him and brought him joy, including equine therapy.
One year later: A proud Engel announced Theo’s birth in August 2019
Sweet: ‘Mary and I are so excited to introduce our new son Theodore (Theo),’ he said. ‘He’s healthy, happy (unless you unwrap his swaddle) and thirsty. We couldn’t be more in love’
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 added.
‘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.
‘That’s all gone. He’s bored. He’s whiny,’ the dad said. ‘There is nothing more frustrating than hearing him upset and not being able to figure out what’s wrong and how to soothe him. The TV helps, but you can only put on cartoons for so many hours a day. He’s averaging around one.’
Engel said Henry can only interact through ‘sight, sound, and touch,’ so they constantly cuddle him, praise him, massage him, and give him kisses. His wife also sings to him and uses flash cards to teach him letters, numbers, and colors.
The couple also has a nearly one-year-old son, Theo, who has started showing his older brother affection as well, but it’s not enough to improve his condition now that he has been removed from all other human interaction.
Hard to handle: Engel and his wife have noticed their son Henry’s overall condition has deteriorated since the start of the pandemic
Loss: Henry, who cannot walk or talk, has been cut off from the therapies that enrich his life due to the pandemic. He is pictured playing with his father and baby brother, Theo
‘Since Henry can’t play normally, school was the only place where he could interact with other children,’ Engel explained. ‘The kids would come up and kiss him, tussle his hair and bring him toys. He didn’t always respond as they expected, but the excitement in his eyes told them he enjoyed and appreciated it.’
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.
Henry can’t stand on his legs and his muscles are weak; his hips can dislocate easily and may one day require major surgery. They bought him a $1,000 upright standing frame that they strap him into, so he puts weight on his hips, knees, and feet.
Despite their struggles amid the pandemic, they consider themselves lucky to be able afford private physical therapy and equipment to help their son.
‘I say he’s lucky to be keeping up with his physical therapy, because we are paying about $100 an hour to have a private therapist — known to us and part of our bubble — come to our home,’ he said.
‘There are risks with having the therapist come, touching and moving Henry, but not doing the therapy has risks too. So we roll the dice, hoping not to hit seven and COVID out.’
Dedication: Physical therapy is a large part of his routine, and the couple will put Henry in a stranding frame so he puts weight on his hips
Engel estimates that they have 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.
‘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 noted.
‘Without physical therapy Henry’s body would deteriorate, collapsing under its increasing weight. It goes without saying you can’t do physical therapy online any more than at-home dentistry or a Zoom appendectomy.’
But despite their efforts, they are still noticing a ‘deterioration in Henry’s overall condition.’ Since the start of the pandemic, his tremors and body shakes have become more pronounced.
His hand-mouthing has also become more frequent, and they have to either put his arms in braces or socks over his hands to keep him from chewing his skin until it bleeds. They’re not sure if these symptoms are due to stress or just his the progression of his condition.
Engel and his wife have had plenty to celebrate with Henry, too. In March of 2019, the little boy said the word ‘Dada’ for the first time, which for Engel was incredibly emotional.
Family: Engel and his wife Mary Forrest are dedicated to finding a cure for their son
‘I finally got a “Dada.” It was a long time coming, which made it all the sweeter — an unexpected reward,’ he wrote in an essay for Today.
‘[Henry’s] physical and mental development aren’t on pace with other children. So when I got the Dada from him, I went a little wild.’
The war correspondent explained that he had been away on a reporting trip, covering the fall of the Islamic State in Syria. While he was gone, his wife Mary Forrest would tell their little boy that he was coming home soon.
When he arrived home from his trip, Henry was already sleeping, so he waited until the next morning to greet his son.
‘As I was singing good morning to Henry and reconnecting after a long trip away, he looked at me, locked eye-contact and said, clear as any word, “Dada,”‘ Engel explained.
‘He didn’t just say it once, but two or three times. There was an urgency and excitement to it,’ he added.
Life-changing moment: Henry, pictured as a baby, was diagnosed with Rett Syndrome in 2017. The genetic mutation leads to severe cognitive deficits and physical impairment
‘Henry had made the sound before. Da-Da, or Ga-Da, and even vaguely made it about me, when I was in the room with him or holding him close to my face.
‘But this time it was stronger and more decisive. Dada was a single word and he was clearly looking at me, talking to me, addressing me.’
Engel said he thanked his son by giving him ‘a big cuddle.’
‘To parents with typically developing children, a little Dada may not seem like a big deal,’ he said. ‘But for me it was a validation, an acknowledgement 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.’
The proud father said that his wife Mary hadn’t gotten a ‘clear “Mama” yet,’ by that time, but he hoped she would one day, because ‘she deserves it.’
Engel also spoke about the moment while appearing on the Today show that week.
‘It was something I’d been waiting for for years,’ he said. ‘A lot of parents, it happens naturally; it happens early on. Henry’s situation is different.’
While there is no cure for Rett’s Syndrome, Texas Children’s Hospital is working on a treatment that Engel hopes will one day benefit his son.
‘It’s not that [Henry] has brain damage — although the seizures aren’t helping — but he’s lacking the protein so the brain isn’t functioning. In Texas, they’re trying to fool the body chemically into producing more of the protein [safely]. If they can, then the other problems become less,’ Engel said.
What is Rett Syndrome? The rare neurological disorder that leaves kids unable to speak, eat, walk, talk, and breathe
One child in 12,000 is born with Rett Syndrome, yet few people have heard of it.
The genetic disorder affects almost exclusively females, causing them to regress neurologically and physically.
The progression of the disease can be roughly divided into four stages.
During the first stage, from about the age of six to 18 months, a baby slows in development, loses interest in play, stops making eye contact, starts walking awkwardly and makes repetitive hand movements.
The second stage, known as ‘rapid destruction,’ begins between the ages of one and four.
The child finds it increasingly difficult to communicate and learn and there is often a deterioration in other brain functions.
Symptoms include an inability to control the hands, sudden distress teamed with screaming, unsteadiness, breathing problems, difficulty sleeping, slow head growth and digestive problems.
The third stage, the ‘plateau,’ begins between age three and ten.
Limbs become floppy, epilepsy may develop and there may be weight loss and teeth-grinding.
However, many parents say children are less distressed and show more interest in their surroundings.
The final stage can last for decades. Usually severe bending of the spine — scoliosis — develops, as well as losing the ability to walk.
Almost all cases are caused by a mutation in the MECP2 gene that prevents nerve cells in the brain from working properly.
Currently, there is no cure and only the symptoms are treated. Sufferers can live to their 40s but most die before 25.