Mary Forrest, wife of NBC News chief foreign correspondent Richard Engel, has opened up about the heartbreaking final days she spent with her six-year-old son Henry’s body before he was cremated.The couple’s oldest child 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 condition is rare, even more so in boys, and there is no cure. In an essay published by Today, Forrest reflected on the day Henry died and the last moments she spent with him in their home.
‘As long as he remained a physical presence on this Earth, I wanted to be with him,’ she wrote.
‘We sat with him in our home for hours.’ The mother of two, who also has a three-year-old son Theo, recalled carrying Henry (pictured) to the car when the funeral home workers came to pick up his body later that night. It was the last time I would ever carry my beautiful Henry.
How many times had I carried him in his life? Hundreds? Thousands? He was almost like an appendage to me; we were physically intertwined due to his disability and him needing me to move him around, to be his legs,’ she explained.
After Henry’s death, her daily routine with him evolved.
She visited his body in the funeral home and would sit with him daily during the week leading up to his cremation. Forrest said she would ‘cry, stroke his hair and face and rest [her] head next to his.’ She brought his books and toys and played his favorite songs.
‘That period of my life is a blur, but those hours with Henry’s body are vivid in my mind,’ she wrote. ‘I would wake up feeling anxious to see him. Longing for him. Each time I went I would stay for about an hour, then leave the room and head to the front door of the funeral home before turning back for one last goodbye.’
She recalled how a few friends came to see Henry with her one day, and through their tears, they managed to laugh at something said that was funny.
She likes to think that Henry was ‘enjoying watching’ them, saying, ‘He always liked to be in the mix.’ Forrest said her husband was concerned about her daily ritual at first and feared it was only exasperating her grief, but going to the funeral home with her helped him understand.
She remembered how she noticed that Henry’s nose was leaking fluid and would wipe his nose with tissues as she sat with him. She still keeps some of the tissues in her dresser.
‘Will I keep them forever?
I don’t know. But any part of Henry in any form — be it hair, teeth, runny nose tissues — is precious right now,’ she explained. On the day of the cremation, Forrest and Engel sat with their son multiple times. The funeral director told her she ‘would know when it was the time to say goodbye,’ and to her surprise she did.
She shared that she is grateful to have had that final week with Henry, saying, ‘It was surreal, heartbreaking, gut-wrenching … and also filled with so much love. There’s just so much love, and that’s what has gotten me through.’ Forrest insisted that would relive every second she had with Henry again, despite ‘knowing there would be this much pain at the end.’
The Engels scattered some of their son’s ashes at a tree in a park that he loved, and she recalled seeing the remnants for months afterward when she visited.
‘I didn’t expect to see them for that long, and it was comforting. “He’s here,” I thought. Six months later, I’ve now come to realize that he’s everywhere,’ she wrote. ‘Wherever I go and whatever I do, he’s with me.’ 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.
‘It’s not just delay. It means lifelong, permanent, untreatable physical and intellectual impairment,’ Engel said on the Today show in 2018. ‘Unfortunately, the more we learned about it, the worse the news got.’ They were told Henry would likely never be able to walk, talk, dress himself, or have the mental capacity beyond a toddler.
He 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 he 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.
‘We’re hoping, in a few years, we can start a treatment that is still being invented,’ he explained 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.
The dad said 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.
They noticed a ‘deterioration in Henry’s overall condition.’ His tremors and body shakes became more pronounced, and his hand-mouthing became more frequent.The parents had to put his arms in braces or socks over his hands to keep him from chewing his skin until it bleeds. They weren’t sure if these symptoms were due to stress or just the progression of his condition. In May 2022, Engel shared that Henry had spent six weeks in the hospital after developing uncontrollable shaking and stiffness.
‘For everyone following Henry’s story, unfortunately he’s taken a turn for the worse,’ Engel tweeted along with a touching video of his younger son, Theo, cuddled in bed with his big brother. ‘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.’
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.
Their son had been treated by doctors at the hospital’s Jan and Dan Duncan Neurological Research Institute before his death.’Researchers are making amazing progress using Henry’s cells to help cure RETT Syndrome so others don’t have to endure this terrible disease,’ Engel added in a follow-up tweet, including a link to the donation page. Nearly two months after Henry’s death, his father paid tribute to him with a heartfelt message on what would have been his seventh birthday.
‘Henry would have turned 7 today,’ Engel tweeted.’A big thank you to everyone who sent kind and thoughtful messages, and donated to support medical research to defeat Rett Syndrome. Happy Birthday Binks (our nickname).’
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