Richard Engel, NBC News senior international reporter, revealed the death of his six-year-old son, Henry, due to Rett Syndrome on Thursday, August 18. Engel broke the news of his son’s death on Twitter. Engel said his kid had Rett syndrome, a rare genetic illness, in his obituary on the Jan and Dan Duncan Neurological Research Institute’s website. Richard Engel, NBC News’ senior international reporter, revealed the death of his six-year-old son, Henry, due to Rett Syndrome on Thursday, August 18.
Engel broke the news of his son’s death on Twitter. Engel said his kid had Rett syndrome, a rare genetic illness, in his obituary on the Jan and Dan Duncan Neurological Research Institute’s website. The six-year-old died on August 9, according to the obituary posted on the Jan and Dan Duncan Neurological Research Institute’s Website.
According to the obituary shown above:
“Henry has a MECP2 gene mutation.” MECP2 mutations cause Rett syndrome, a condition that mostly affects girls after the age of one, depriving them of acquired abilities and leaving them with cognitive deficiencies, speech loss, and a range of physical issues.”
In 2018, Richard Engel and his son, Henry, visited the institution, and Dr. Huda Zoghbi handled the toddler’s condition. According to Dr. Zoghbi, Henry’s treatment and diagnosis boosted research on the disease. The doctor went on to say that Henry would be an inspiration to her and the team, who are actively investigating and developing a therapy for the MECP2 gene abnormality.
Rett syndrome causes, life expectancy, cure development, and other information
The syndrome is a rare inherited neurological and developmental condition that impairs brain function and impairs motor and verbal abilities. While the condition mostly affects female offspring, it has also been seen in male infants. The illness appears in newborns at a relatively young age, frequently during the first six months. This condition is caused by a mutation in the MECP2 gene, which also causes the MECP2 protein to fail. This protein is required for proper brain development. According to Boston Children’s Hospital, the illness may strike at any time and in any kid. However, as previously stated, female children are more vulnerable to the sickness.
While the condition may cause a variety of symptoms, the most common include motor skill degeneration, cognitive decline, communication impairment, heart issues, scoliosis, kyphosis, seizures, and many more.
According to Boston Children’s Hospital:
“There is no treatment for Rett syndrome.” However, research on novel medications that may enhance symptom management is ongoing.”
Average life expectancy
Because of the syndrome’s rarity, a precise approximation of life expectancy is currently hard to determine. According to Rett Syndrome News, some of the afflicted people are now in their 40s and 50s. However, data beyond that age range is difficult to get. Meanwhile, according to the International Rett Syndrome Foundation:
“According to Natural History Study data, a girl with RTT has a 100% chance of reaching the age of 10, a 90% chance of reaching the age of 20, a greater than 75% chance of reaching the age of 30, a greater than 65% chance of reaching the age of 40, and a greater than 50% chance of reaching the age of 50.” These odds are predicted to increase as nutrition and general care improve.”
It is likely that a remedy to reduce the mutation or assure its prevention may be accessible within the next several years. However, the disease’s rarity is one of the reasons why research takes so long.
