NBC foreign correspondent Richard Engel has described the emotional moment his three-year-old son, who lives with a rare neurological disorder, called him ‘Dada’ for the first time.
The 45-year-old journalist’s son Henry was diagnosed with 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 opened up about Henry’s milestone on the Today show Friday after penning a touching essay about the significance of hearing his son say ‘Dada,’ explaining it was something he has been waiting to hear for years.
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Major milestone: Richard Engel, 45, has opened up about the touching moment his three-year-old son Henry called him ‘Dada’ for the first time
Diagnosis: Henry is living with Rett Syndrome, a rare genetic neurological disorder that leads to severe cognitive deficits and physical impairment
‘I finally got a “Dada.” It was a long time coming, which made it all the sweeter — an unexpected reward,’ he began his essay. ‘Our son Henry is three and a half years old and has special needs.
‘His 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.
Engel said his son ‘struggles with basic things like picking up a ball with both hands,’ so it is hard to tell how much Henry understands.
Over the moon: The NBC correspondent discussed Henry’s milestone moment on the Today show Friday. He said it has been something he has been waiting for for years
Moment: Engel said Henry made eye contact with him and called him ‘Dada’ a few days ago after he returned home from a reporting trip in Syria
Hopes: Engel also discussed how a team of experts are trying to find a cure for his condition
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.
‘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.’
Expert: The family is working with Dr. Huda Zoghbi, director of the Duncan Neurological Research Institute at the Texas Children’s Hospital
Progress: The doctor discovered the genetic cause of Rett Syndrome a few years ago and is now working specifically on Henry’s case
Explanation: Henry’s neurological disorder is caused by the mutation of a gene called MECP2
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 correspondent said that his wife Mary hasn’t gotten a ‘clear “Mama” yet,’ but he hopes she will one day because ‘she deserves it.’
Engel also spoke about the moment while appearing on the Today show Friday morning.
‘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.’
Goal: Dr. Zoghbi has never seen a mutation like Henry’s, and she believes that the little boy can help her find a treatment for MECP2 disorders such as Rett Syndrome
Family: Engel and his wife Mary Forrest (left and right) are dedicated to finding a cure for their son. The journalist said that Henry calling him ‘Dada’ was validation that he loves them
Devoted mother: The correspondent said that his wife Mary hasn’t gotten a ‘clear “Mama” yet,’ but he hopes she will one day because ‘she deserves it’
Heartbreaking: Henry’s condition means he cannot walk or really talk. He will likely face more health problems as time goes on
‘My world lit up,’ he added.
The family is working with Dr. Huda Zoghbi, an investigator at the Howard Hughes Medical Institute and director of the Duncan Neurological Research Institute at the Texas Children’s Hospital.
The doctor discovered the genetic cause of Rett Syndrome a few years ago and is now working specifically on Henry’s case, which is slightly different from the standard variation of the condition.
Dr. Zoghbi has never seen a mutation like Henry’s, and she believes that the little boy can help her find a treatment for MECP2 disorders such as Rett Syndrome.
In his essay, Engel explained that Henry’s neurological disorder is caused by the mutation of a gene called MECP2. The gene produces a protein, which is also called MECP2.
Life-chaning moment: Henry was diagnosed with Rett Syndrome nearly two years ago
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.
The mutation causes Rett Syndrome, a brain development disorder that typically affects girls. In boys, the mutation is called MECP2, However, people usually call it Rett Syndrome as well.
MECP2 mutations in boys cause more severe problems and often premature death.
With their research, Dr. Zoghbi and her team are trying to find a way to boost the amount of MECP2 Henry produces. She thinks that she will have some sort of breakthrough in the next few years.
At the end of his essay, Engel described how Henry’s condition has helped him be grateful for the little things in life.
‘Having a special needs child makes you savor the patches of sunshine you cross on the hard, and often lonely, road toward a cure: the doctor’s visits that don’t go as badly as expected, a solid night’s sleep, or a Dada three and a half years in the making,’ he wrote.