The legacy of Henry Engel, the 6-year-old son of NBC News’ chief foreign correspondent Richard Engel, is still living on almost eight months after his death from Rett syndrome.
Doctors who worked with Henry at the Duncan Neurological Research Institute in Houston dedicated a balcony in his name this week, Engel said, honoring his son’s life, “which was far too short, and also to recognize his contributions to science.”
“We have a vendetta against Rett syndrome and we want to cure it,” Engel’s wife, Mary Forrest Engel, said on TODAY. “We don’t want anyone else to go through this. We don’t want any other child to lose their life. Henry lost his life to Rett syndrome, and we want it gone.”
The Engels announced on Aug. 18 Henry had died after his battle with Rett syndrome, a rare genetic neurological disorder without a treatment or cure.
Henry was diagnosed with the disorder after he was slow to reach some developmental milestones as an infant. The Engels brought Henry to the Duncan Neurological Research Institute at Texas Children’s Hospital in 2018 to seek further guidance.
“A single, devastating typo in his genetic code robbed him of the ability to walk, talk and control his body,” Engel said on TODAY. “And it caused numerous underlying health conditions, including impacting his breathing.”
Rett syndrome can cause loss of speech, involuntary hand movements, problems with walking, seizures, scoliosis and breathing issues, according to the International Rett Syndrome Foundation.
The disorder affects about one in every 10,000 to 15,000 live female births worldwide, according to the National Institutes of Health. Rett syndrome is more common in females because they have two X chromosomes, and the cause of the disorder is due to a mutation on the MECP2 gene on the X chromosome not functioning, TODAY.com previously reported.
The disorder is more severe in males…
Read the full article here
