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richard engel shares son’s rett syndrome has “taken a turn for the worse”

engel's son, henry, was diagnosed with rett syndrome when he was just 2 years old. the condition almost exclusively occurs in females.

by emma jones

published jun 02, 2022

last updated feb 16, 2023

3 minute read

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3 minute read

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richard engel shares son’s rett syndrome “taken a turn for the worse”

richard engel shared with fans through a tweet that his son's condition has worsened. getty

richard engel, nbc news chief foreign correspondent, says his son has “taken a turn for the worse” as the young boy continues to battle rett syndrome. engel shared that his son henry thomas, 6, had been diagnosed with the rare neurological condition when he was just two years old, according to people. when engel learned of his son’s diagnosis, he was in south korea, covering the escalating tensions between north korea with the u.s. and south korea.

the heartbreaking news has continued to come, as engel told fans that henry’s condition has progressed.

“for everyone following henry’s story, unfortunately he’s taken a turn for the worse,” engel shared in a twitter post tuesday. “his condition progressed and he’s developed dystonia: uncontrolled shaking/ stiffness. he was in the hospital for 6 weeks, but is now home and getting love from brother theo.”

in a video also shared with the post, henry is seen lying on a bed with his brother theo, 2, who leans over to kiss his brother on his forehead.

for everyone following henry’s story, unfortunately he’s taken a turn for the worse. his condition progressed and he’s developed dystonia: uncontrolled shaking/ stiffness. he was in the hospital for 6 weeks, but is now home and getting love from brother theo. pic.twitter.com/7atwnphj6q
— richard engel (@richardengel) may 31, 2022

henry’s experiences are uncommon, as rett syndrome almost exclusively occurs in girls. this is because the genetic mutations that cause the diagnosis are linked to the x chromosome. since females have two x-chromosomes, they are able to live with the condition — although with often severe neurological impairments. for males, who only have one x chromosome, these mutations are usually not viable.

what is rett syndrome?

rett syndrome is a rare, neurological disorder that affects a wide variety of physical functions, for example, walking, eating and breathing. roughly 1 in 10,000 females are diagnosed with rett syndrome each year.

other symptoms include involuntary hand movements (like making a handwashing motion), seizures, sleep disturbances, and a slow growth rate for the head, feet and hands.

rett syndrome is usually diagnosed between six to 18 months of age and, although it affects development, it is not known to be a progressive disorder, with patients typically living to their 40s or 50s.

symptoms are caused by mutations to the mecp2 gene found on the x chromosome. this gene plays a critical role in many functions of neurons, which is likely why the disease has such an array of symptoms.

there is no cure for rett syndrome, with treatments typically focusing on managing seizures, as well as improving communication and physical function.

four stages of rett syndrome

although rett syndrome is not a progressive condition, its prognosis is divided up into four stages that occur as the child grows.

according to the national institute of neurological disorders, the four stages are:

stage one. the early onset stage, is often missed because of the subtle symptoms that occur. for example, children may stop making eye contact or have delays in reaching developmental milestones such as sitting up or crawling.

stage two. the rapid destructive stage, occurs between one to four years of age and can last for several months. in this stage, the patient actually loses functions they had before, such as talking. involuntary hand movements also begin to occur at this stage, like constantly wringing their hands or grasping.

stage three. the third stage can last for several years to decades and is referred to as the plateau stage. its onset is usually from two to 10 years of age and is characterized by motor difficulties and seizures. during this stage, females may also show an improvement in attention spans, communication skills and interest in their surroundings.

stage four. known as the late motor deterioration stage — also possibly lasting years — patients may again lose motor function, including reduced mobility (such as potentially losing the ability to walk) and muscle weakness. cognition and communication skills generally do not decrease during this stage, but the patient may also experience rigidity and muscle spasticity.

emma jones is a multimedia editor with healthing. you can reach her at emjones@postmedia.com or on instagram and twitter @jonesyjourn.

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richard engel shares son’s rett syndrome has “taken a turn for the worse”

engel's son, henry, was diagnosed with rett syndrome when he was just 2 years old. the condition almost exclusively occurs in females.

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richard engel shares son’s rett syndrome has “taken a turn for the worse”

engel's son, henry, was diagnosed with rett syndrome when he was just 2 years old. the condition almost exclusively occurs in females.

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