'We have a vendetta': Richard Engel, wife open up about struggle to find cure for illness that took son Henry's life
HOUSTON, TEXAS: Eight months after the death of their son Henry, NBC News chief foreign correspondent Richard Engel and his wife Mary Forrest Engel have spoken openly about Henry's legacy and how they are still working to find a treatment for Rett Syndrome. After a protracted fight with the uncommon and incurable genetic neurological illness that causes significant cognitive deficiencies and physical handicaps, the couple's six-year-old son died suddenly in August last year.
After visiting the Jan and Dan Duncan Neurological Research Institute at Texas Children's Hospital in Houston, where a balcony was dedicated in Henry's honor, the Engels appeared on the Today Show on Thursday. Forrest Engel told Savannah Guthrie and Hoda Kotb, "We have a vendetta against Rett syndrome and we want to cure it. 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."
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NBC’s Richard Engel makes tragic announcement that son Henry, 6, has died from Rett Syndrome
'Devastating typo in genetic code'
When Henry was diagnosed with Rett Syndrome as a toddler in 2017, his parents were open about his medical history, including his progress and therapeutic procedures. He explained, "A single, devastating typo in his genetic code robbed him of the ability to walk, talk and control his body. And it caused numerous underlying health conditions, including impacting his breathing," as per reports.
The illness is caused by changes in the MECP2 gene, which is located on the X chromosome, according to the National Institutes of Health. Boys who have the illness are extremely rare and display more severe symptoms because they only have one X chromosome. The disorder affects girls almost exclusively. The mutation prevents the brain from developing normally, which results in slower growth, problems with hand movements, a lack of language skills, challenges with muscles and coordination, and breathing difficulties. Physical therapy, speech therapy, and behavioral therapy are just a few of the therapies that have been used to treat the incurable ailment so far.
Henry saw a decline in health in May 2022 and was hospitalized for six weeks after contracting dystonia, a condition marked by excessive stiffness and shaking. On August 18, nine days after Henry died, the father of two broke the terrible news on Twitter in a joint message with his wife, as per reports.
The pair invited anyone who wished to help the Texas Children's Hospital's Rett Syndrome research by making a donation in Henry's honor. Years ago, Dr Huda Zoghbi, the director of the Duncan Neurological Research Institute, worked with Henry, whose particular genetic mutation had never been observed previously, to identify the genetic origin of Rett Syndrome, as reported by Brain and Life Magazine. The Engels, who also have a 3-year-old son named Theo, are committed to finding a treatment so that no other family has to go through what they did with Henry.
Henry continues to contribute
Engel said, "It didn't happen in his lifetime, but with his cells still working, still contributing to science, I'm convinced we're going to get there so that no other child, no other family has to go through this terrible trauma and that his life will have a deeper meaning. If he can continue to contribute even from beyond, it would be an amazing, miraculous legacy that we're looking forward to," as per reports.