(RoyalPatriot.com )- Last Thursday, NBC News chief foreign correspondent Richard Engel announced on Twitter that his 6-year-old son Henry had died from Rett syndrome, a genetic brain disorder without treatment or a cure.
According to the National Institute of Neurological Disorders and Stroke, Rett syndrome causes the loss of the use of hands, problems with walking, seizures, delayed brain and head growth, and cognitive disability.
After Henry was born in 2015, he was slow to reach some developmental milestones. He underwent a series of medical exams and genetic tests and doctors discovered that Henry had a mutation in his MECP2 gene. This MECP2 mutation causes Rett syndrome.
The disorder, which is more commonly found in girls during their first year, leaves the sufferer battling cognitive deficits, loss of speech, and a wide array of motor difficulties.
Henry was taken to the Texas Children’s Hospital’s Duncan Neurological Research Institute (NRI) in 2018 to undergo further testing.
Over the years, Engel shared regular updates on his son’s condition, candidly talking about the struggles and joys of raising and caring for a child with special needs.
In March, Engel reported that Henry’s health had “taken a turn for the worse.” He said on Twitter that his son had begun to shake uncontrollably and suffer from stiffness. Henry remained in the hospital for six weeks before being sent home.
On the hospital tribute page to Henry, Engel described his son as someone who “made the best of every single day and worked tirelessly in his many physical and developmental therapies.”