What you need to know about the Rett syndrome, which Richard Engel’s kid suffered from

On May 31, 2015, in New York City, correspondent Richard Engel attends the 74th annual Peabody Awards ceremony at Cipriani Wall Street. Countess Jemal/Getty Images remove caption

switch to caption Countess Jemal/Getty Images On May 31, 2015, in New York City,

Correspondent Richard Engel attends the 74th Annual Peabody Awards Ceremony at Cipriani Wall Street.

Countess Jemal/Getty Images NBC News Chief Foreign Correspondent Richard Engel revealed on Thursday that his 6-year-old son Henry, who was born with Rett syndrome, had passed away.

Engel stated in a tweet on August 18: “Henry, our dear boy, passed away. He glowed with an infectious laugh, the sweetest blue eyes, and a simple smile. He was always surrounded by our love, and he gave it to us in spades.”

A link to a page on the Texas Children’s Hospital website that described Henry’s medical history and how he was identified as having Rett syndrome was included in Engel’s tweet. According to Dr. Tim Benke, a professor of pediatric neurology at the University of Colorado, the disease is exceedingly uncommon, especially in boys.

“About 1 in 20,000 to 1 in 10,000 female babies are affected. But since it’s so uncommon, we don’t know how frequently it occurs with male births “Tells NPR, Benke.

Henry, our dear son, passed gone. He glowed with an infectious laugh, the sweetest blue eyes, and a simple smile. He was always surrounded by our love, and he gave it to us in spades. Richard and Mary. https://t.co/M8LV8SHv6r pic.twitter.com/21Ja6TOtjH

Richard Engel August 18, 2022 (@RichardEngel) QUITTING SYNDROME? According to the International Rett Syndrome Foundation , Rett syndrome is a rare inherited neurological condition that first manifests between the ages of 6 and 18 months. Children begin to miss developmental checkpoints or lose previously acquired skills.

Movement issues, the loss of hand and language skills, and persistent hand gestures, “such as hand-wringing, squeezing, clapping or tapping, placing hands in the mouth, or washing and rubbing movements,” are all used to diagnose the condition. according to the Mayo Clinic. These symptoms prompt medical professionals to request specialized testing to confirm the diagnosis while looking for a genetic error in the MECP2 gene.

WHAT DO WE KNOW ABOUT RETT SYNDROME DEVELOPMENT? occurs very rarely in males is a condition that often affects males more severely than females. Many people experience symptoms at delivery or very soon after, and serious issues start to appear very soon after. Medical assistance is urgently needed for these people.

We still don’t fully comprehend a lot of things, says Benke. “We have some theories as to why there is a difference between male and female births. And we believe that the genetic error occurs just before the union of the sperm and egg. Additionally, sperm are more likely to experience it than eggs do. We are unaware of its frequency because it occurs so infrequently.”

Due to the rarity of this ailment among males, it is challenging to enroll enough of them in clinical trials for treatments, which has been a problem for the medical profession.

Although Rett syndrome may not be widely known, the foundation said that it is at the forefront of research being conducted all around the world.

DOES THE RETT SYNDROME HAVE A CURE? According to Benke, there is currently no treatment for it. You can’t go back in time and change the spelling of “in the genes” because it is a hereditary condition.

He said, “All of the treatments are systemic.” Henry Engel’s muscular tone was the most challenging aspect of his condition, therefore you try to treat seizures while also trying to enhance it.

Currently, sedatives like clonidine and antiseizure medications like oxcarbamazepine can be administered to treat pain and control seizures, respectively. Benke is optimistic that emerging treatments will help both genders and individuals with Rett syndrome.

He claimed the third round of testing for a medication to treat Rett syndrome symptoms in females was complete. The FDA has received an application for the medication trofinetide, and researchers anticipate hearing back in 2023. If approved, there’s a chance that this therapy will also work for men, according to Benke.

It’s not a home run, but it’s a form of therapy that will put us on first base and that we believe might be quite beneficial, he continued.

Benke underlined that there are resources available to help Rett syndrome patients, as well as their families. He noted that regional and national organizations like the the Rocky Mountain Rett Association and the International Rett Syndrome Foundation are committed to linking people with specialized care. People need to understand that while things may seem bleak, there is still hope.

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