Richard Engel and his wife reflect on their son Henry’s legacy eight months after his death

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Richard Engel and his wife reflect on their son Henry’s legacy eight months after his death

NBC News chief foreign correspondent Richard Engel and his wife, Mary Forrest Engel, have opened up about their late son Henry's legacy and how t

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NBC News chief foreign correspondent Richard Engel and his wife, Mary Forrest Engel, have opened up about their late son Henry’s legacy and how they are continuing their fight to find a cure for Rett Syndrome eight months after his death. 

The couple’s six-year-old son passed away last August after a years-long battle with the rare and incurable genetic neurological disorder, which leads to severe cognitive deficits and physical impairment. 

Engel and Forrest Engel appeared on the Today show Thursday after visiting the Jan and Dan Duncan Neurological Research Institute at Texas Children’s Hospital in Houston, where a balcony was dedicated in Henry’s name.

‘We have a vendetta against Rett syndrome and we want to cure it,’ Forrest Engel told Savannah Guthrie and Hoda Kotb. ‘We don’t want anyone else to go through this. We don’t want any other child to lose their life. Henry lost his life to Rhett syndrome, and we want it gone.’ 

NBC News chief foreign correspondent Richard Engel and his wife, Mary Forrest Engel, opened up about their son Henry's legacy on the Today show Thursday, eight months after his death

NBC News chief foreign correspondent Richard Engel and his wife, Mary Forrest Engel, opened up about their son Henry's legacy on the Today show Thursday, eight months after his death

NBC News chief foreign correspondent Richard Engel and his wife, Mary Forrest Engel, opened up about their son Henry’s legacy on the Today show Thursday, eight months after his death 

The couple's six-year-old son passed away last August after a years-long battle with Rett Syndrome, a genetic mutation that leads to severe cognitive deficits and physical impairment

The couple's six-year-old son passed away last August after a years-long battle with Rett Syndrome, a genetic mutation that leads to severe cognitive deficits and physical impairment

The couple’s six-year-old son passed away last August after a years-long battle with Rett Syndrome, a genetic mutation that leads to severe cognitive deficits and physical impairment

Henry was a toddler when he was diagnosed with Rett Syndrome in 2017, and his parents were candid about his medical journey, including his progress and therapy treatments. 

‘A single, devastating typo in his genetic code robbed him of the ability to walk, talk and control his body,’ Engel explained in the segment.’ And it caused numerous underlying health conditions, including impacting his breathing.’ 

Rett Syndrome is caused by mutations in the MECP2 gene found on the X chromosome, according to National Institute of Health. The disorder occurs almost exclusively in girls and is extremely rare in boys, who present more severe symptoms because they only have one X chromosome. 

The mutation stops the brain from growing properly, and 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, including physical therapy, speech therapy, and behavioral therapy. 

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Earlier this week, the Engels visited the Jan and Dan Duncan Neurological Research Institute at Texas Children¿s Hospital in Houston, where a balcony was dedicated in Henry's name

Earlier this week, the Engels visited the Jan and Dan Duncan Neurological Research Institute at Texas Children¿s Hospital in Houston, where a balcony was dedicated in Henry's name

Earlier this week, the Engels visited the Jan and Dan Duncan Neurological Research Institute at Texas Children’s Hospital in Houston, where a balcony was dedicated in Henry’s name

Henry's physical Dr. Huda Zoghb told Engel that Henry's death was 'one of the hardest days' of her career, saying she and her team 'all cried'

Henry's physical Dr. Huda Zoghb told Engel that Henry's death was 'one of the hardest days' of her career, saying she and her team 'all cried'

Henry’s physical Dr. Huda Zoghb told Engel that Henry’s death was ‘one of the hardest days’ of her career, saying she and her team ‘all cried’ 

'Our Rett syndrome research will continue to push as hard as possible to develop treatments,' Dr. Zoghb said at the unveiling. 'This is how we will honor Henry¿s life'

'Our Rett syndrome research will continue to push as hard as possible to develop treatments,' Dr. Zoghb said at the unveiling. 'This is how we will honor Henry¿s life'

‘Our Rett syndrome research will continue to push as hard as possible to develop treatments,’ Dr. Zoghb said at the unveiling. ‘This is how we will honor Henry’s life’

Henry's specific genetic mutation had never been seen before, and his doctor believes his cells can be used to find a cure for Rett Syndrome

Henry's specific genetic mutation had never been seen before, and his doctor believes his cells can be used to find a cure for Rett Syndrome

Henry’s specific genetic mutation had never been seen before, and his doctor believes his cells can be used to find a cure for Rett Syndrome 

‘But my wife Mary and I — she was the main caregiver — never quit for a moment,’ Engel said. ‘And neither did Henry. With regular therapies to keep his body moving and his mind active, he was making progress. Learning to take a few steps in his walker and communicating with cards and a computer.’ 

In May 2022, Henry took a turn for the worse and spent six weeks in the hospital after developing dystonia, which is characterized by uncontrollable shaking and stiffness. 

‘His underlying health issues got much worse, until it was too much,’ the journalist explained on the Today show. 

The father of two announced the heartbreaking news of Henry’s death in a joint statement with his wife on Twitter on August 18, nine days after he passed. 

‘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. 

The couple encouraged those who wanted to honor Henry’s memory to make a contribution to the Texas Children’s Hospital in support of its Rett Syndrome research.

Henry, pictured as a baby, was diagnosed with Rett Syndrome in 2017. There is no cure for the mutation, which stops the brain from growing properly

Henry, pictured as a baby, was diagnosed with Rett Syndrome in 2017. There is no cure for the mutation, which stops the brain from growing properly

Henry, pictured as a baby, was diagnosed with Rett Syndrome in 2017. There is no cure for the mutation, which stops the brain from growing properly

Treatments for the incurable condition are mostly limited to various forms of therapy, including physical therapy

Treatments for the incurable condition are mostly limited to various forms of therapy, including physical therapy

Treatments for the incurable condition are mostly limited to various forms of therapy, including physical therapy 

'He was so hard working and he had to do so much that a child should not necessarily have to do. But he did it. And he did it most often with a smile, and he just never gave up,' Forrest Engel said of her son

'He was so hard working and he had to do so much that a child should not necessarily have to do. But he did it. And he did it most often with a smile, and he just never gave up,' Forrest Engel said of her son

‘He was so hard working and he had to do so much that a child should not necessarily have to do. But he did it. And he did it most often with a smile, and he just never gave up,’ Forrest Engel said of her son  

Dr. Huda Zoghbi, director of the Duncan Neurological Research Institute, discovered the genetic cause of Rett Syndrome decades ago and worked with Henry, whose specific genetic mutation had never been seen before. 

She believes that Henry’s cells can be used to find a cure for the disorder, as well as advance research for other neurological conditions such as autism. 

In an interview with Engel, Dr. Zoghbi shared how heartbroken she was after learning of Henry’s death last year.  

‘So that was one of the hardest days in our career, I would share openly with you,’ she said. ‘We all cried.’ 

Dr. Zoghbi joined the couple at the unveiling of Henry’s balcony at the Duncan Neurological Research Institute this week. 

In May 2022, Henry took a turn for the worse and spent six weeks in the hospital after developing dystonia, which is characterized by uncontrollable shaking and stiffness

In May 2022, Henry took a turn for the worse and spent six weeks in the hospital after developing dystonia, which is characterized by uncontrollable shaking and stiffness

In May 2022, Henry took a turn for the worse and spent six weeks in the hospital after developing dystonia, which is characterized by uncontrollable shaking and stiffness 

Engel announced Henry's death in a joint statement with his wife on Twitter

Engel announced Henry's death in a joint statement with his wife on Twitter

Engel announced Henry’s death 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

The couple encouraged those who want to honor Henry's memory to donate to the hospital's Rett Syndrome research

The couple encouraged those who want to honor Henry’s memory to donate to the hospital’s Rett Syndrome research

Engel tweeted a photo of the balcony dedicated to Henry on Thursday

Engel tweeted a photo of the balcony dedicated to Henry on Thursday

Engel tweeted a photo of the balcony dedicated to Henry on Thursday 

‘Our Rett syndrome research will continue to push as hard as possible to develop treatments,’ she said. ‘This is how we will honor Henry’s life.’

Forrest Engel shared a few words about her late son at the dedication, saying, ‘Henry had no bad qualities. No, none, zero. But the one that I thought about and I was thinking about today was his tenacity.

‘He was so hard working and he had to do so much that a child should not necessarily have to do. But he did it. And he did it most often with a smile, and he just never gave up.’ 

The Engels, who are also parents to a three-year-old son, Theo, are determined to find a cure for Rett Syndrome to ensure no other family has to endure what they went through with Henry. 

‘It didn’t happen in his lifetime, but with his cells still working, still contributing to science, I’m convinced we’re going to get there so that no other child, no other family has to go through this terrible trauma and that his life will have a deeper meaning,’ Engel said. 

‘If he can continue to contribute even from beyond, it would be an amazing, miraculous legacy that we’re looking forward to.’ 

'We have a vendetta against Rett syndrome and we want to cure it,' Forrest Engel explained on the Today show. 'We don't want anyone else to go through this'

'We have a vendetta against Rett syndrome and we want to cure it,' Forrest Engel explained on the Today show. 'We don't want anyone else to go through this'

‘We have a vendetta against Rett syndrome and we want to cure it,’ Forrest Engel explained on the Today show. ‘We don’t want anyone else to go through this’

The mom told Guthrie and Kotb that she thinks of Henry all of the time and allows herself to feel her pain when grief washes over her. She bought a journal and plans on writing to him

The mom told Guthrie and Kotb that she thinks of Henry all of the time and allows herself to feel her pain when grief washes over her. She bought a journal and plans on writing to him

The mom told Guthrie and Kotb that she thinks of Henry all of the time and allows herself to feel her pain when grief washes over her. She bought a journal and plans on writing to him 

'He is still very much a part of our family,' said the mom. The Engels are also parents to a three-year-old son, Theo

'He is still very much a part of our family,' said the mom. The Engels are also parents to a three-year-old son, Theo

‘He is still very much a part of our family,’ said the mom. The Engels are also parents to a three-year-old son, Theo 

Forrest Engel opened up about the heartbreaking final days she spent with Henry’s body and coping with their devastating loss in an essay published by Today last month. 

The mom told Guthrie and Kotb that she thinks of Henry all of the time and allows herself to feel her pain when grief washes over her. 

‘Because to push it down and try to not feel it doesn’t help at all,’ she explained, noting that ‘long walks really help.’

Forrest Engel also shared how a friend who lost her daughter told her she writes a letter to her child every night.  

‘So I ordered a journal,’ she said. ‘I’m going to start to try to do that because I think that ending my day with writing to Henry and just saying, “This is what we did today.” 

‘He is still very much a part of our family.’

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