Richard Engel, NBC News senior international correspondent, revealed the death of his six-year-old son Henry, due to Rett syndrome on Thursday, August 18. Engel announced the news of his son’s death on Twitter. Engel said his son has Rett syndrome, a rare genetic condition, in an obituary on the website of the Jan and Dan Duncan Institute for Neurological Research. Richard Engel, senior international correspondent for NBC News, revealed the death of his six-year-old son Henry, from Rett syndrome on Thursday, August 18.
Engel announced the news of his son’s death on Twitter. Engel said his son has Rett syndrome, a rare genetic condition, in an obituary on the website of the Jan and Dan Duncan Institute for Neurological Research. The 6-year-old boy died on August 9, according to an obituary posted on the website of the Jan and Dan Duncan Institute for Neurological Research.
According to the obituary shown above:
“Henry has a mutation in the MECP2 gene.” The MECP2 mutation causes Rett syndrome, a condition that mainly affects girls after the first year of life, robbing them of their ability to acquire and leaving them with cognitive impairment, speech loss and a host of physical problems.”
In 2018, Richard Engel and his son Henry visited the facility and Dr Huda Zoghbi took care of the child’s condition. According to Dr. Zoghbi, Henry’s treatment and diagnosis spurred research into the disease. The doctor went on to say that Henry will be an inspiration to her and that the team is actively researching and developing therapies for the MECP2 gene abnormality.
Rett syndrome causes, life expectancy, drug development and more
This syndrome is a rare inherited neurological and developmental condition that damages brain function and impairs motor and speech abilities. Although this condition mainly affects females, it also occurs in male infants. It occurs in very young infants, usually in the first six months. The condition is caused by mutations in the MECP2 gene, which also causes the MECP2 protein to malfunction. This protein is necessary for proper brain development. According to Boston Children’s Hospital, the disease can strike any child at any time. However, as noted above, girls are more susceptible to the disease.
While the condition can cause a variety of symptoms, the most common include motor skill degeneration, cognitive decline, communication disorders, heart problems, scoliosis, hunchback, seizures, and more.
According to Boston Children’s Hospital:
“There is no cure for Rett syndrome.” However, research is underway on new drugs that may improve symptom control.”
Average life expectancy
Due to the rarity of the syndrome, it is currently difficult to determine an accurate estimate of life expectancy. According to Rett Syndrome News, some of those affected are now in their 40s and 50s. However, data outside of that age range is difficult to obtain. Meanwhile, according to the International Rett Syndrome Foundation:
“According to the Natural History Study, girls with RTT have a 100% chance of living to age 10, a 90% chance of living to age 20, a more than 75% chance of living to age 30, a more than 65% chance of living to age 40, and a more than 50% chance of living to age 50.” These odds are predicted to increase as nutrition and general care improve.”
It is likely that a drug to reduce the spike or guarantee to stop it will be available within the next few years. However, the rarity of the disease is one of the reasons why research has taken so long.
Categories: Entertaintment
Source: vcmp.edu.vn