VFAB News’ Richard Engel claims his 6-yr-previous son, Henry, has died

Engel shared a connection to a memorial website page on the Texas Children’s Healthcare facility site, which presented more specifics on Henry’s life and his diagnosis of Rett syndrome, a genetic mind condition devoid of a procedure or remedy.

In accordance to the Countrywide Institute of Neurological Ailments and Stroke, Rett syndrome can result in decline of use of the fingers, issues with strolling, seizures, slowed mind and head advancement and intellectual disability.

Born on Sept. 29, 2015, Henry was slow to reach sure developmental milestones as an toddler. Following a series of health care tests and a genetic test, health professionals learned that he had a mutation in his MECP2 gene.

“MECP2 mutations trigger Rett syndrome, a condition that usually affects girls soon after their initial birthday, robbing them of acquired competencies and leaving them with cognitive deficits, decline of speech, and a selection of motor issues,” the Texas Children’s Healthcare facility website page explains.

The Engel family members introduced Henry to the hospital’s Duncan Neurological Study Institute (Duncan NRI) in 2018 to seek out added answers. The Duncan NRI’s Founding Director Dr. Huda Zoghbi studied Henry’s mutation intently.

“Henry was distinctive in so numerous techniques. His loving and endearing smile, and the way he connected with his eyes, stole my heart from the time I met him. His tranquil combat from this horrible sickness was incredible,” the medical professional wrote in a tribute.

In accordance to Zoghbi, Henry remaining a lasting impression on the full Duncan NRI team and their ongoing Rett study.

“We will continue on to push as challenging as attainable to produce treatments. This is how we will honor his lifetime,” the health care provider ongoing.

Over the several years, Engel has shared frequent updates on his son’s condition and has been candid about the struggles and the joys of parenting a boy or girl with distinctive requirements.

In March 2022, he shared a somber update on Henry’s health and stated his son had “taken a flip for the worse.”

“His condition progressed and he’s produced dystonia: uncontrolled shaking/ stiffness. He was in the clinic for 6 weeks, but is now household and obtaining appreciate from brother Theo,” he wrote on Twitter at the time.

On his tribute page, Henry is explained as anyone who “made the greatest of each one day and labored tirelessly in his quite a few actual physical and developmental therapies.”

“He proceeds to be an inspiration for Dr. Zoghbi and her crew as they work to uncover successful remedies for Rett syndrome, and they currently are making significant progress with Henry’s individual cells,” the put up claims.