NBC News Richard Engel Opens Up About His 2-Year-Old's Battle With Rett Syndrome
June 15, 2018 16:14 By Fabiosa
Retts syndrome is a medical disorder that affects the neurology of children, almost exclusively girls. Symptoms include noticeable slowing in mental development, loss of motor skills, seizure, reduced intellectual ability, and problems walking. Dr. Andreas Rett, an Austrian physician, first described the condition in 1966.
Sadly, the condition also affects boys in rare cases, and NBC News chief foreign correspondent Richard Engel knows this too well. His 2-year-old son, Henry, happens to suffer from the condition.
Speaking on the TODAY show earlier this year, Engel recalled how a genetic scan result revealed his son’s condition. He was with U.S. troops in South Korea at the time.
I called the doctor and he said, 'We found something. It’s very, very severe. It’s life long, not treatable'. I was in a state of shock. I got back into this convoy, shaking. It was the worst day of my life.
Engel said he already sensed that something was wrong with his son when the boy could not clap or walk by the time he hit two. His wife, Mary Forrest, was equally concerned. He initially signed it off to late development.
It was a mystery and we thought, 'Okay, well, there are late bloomers'.
The test results proved him wrong, and Engel was hit the harsh reality that his son would not grow like most other children. Doctors revealed that the condition was untreatable and delivered even worse news.
Henry’s mental capacity may most likely never develop beyond the toddler stage, even though he will grow physically. The genetic brain disorder he suffers from is a variation of Rett syndrome, and he will live with it for the rest of his life.
Although the diagnosis is bleak, there is some hope for the future. Dr. Huda Zoghbi, the same researcher who helped discover the mutation that causes Rett syndrome, is currently working on possible treatments for the condition.
Henry's mutation is unique in the world. But because it's unique is what makes it so valuable. Sometimes, from the rarest thing, you can learn the most.
Meanwhile, Engel and his wife are doing their best to keep Henry comfortable. The happy child undergoes physiotherapy and pays regular visits to the hospital for sensory stimulation. His mother dedicates all her time now to taking care of him and is keen on the little progress he makes.
I'm basically his manager for that and cheerleader. It gives me purpose, and it's important. I see it helping him.
More thoughts, reflections on being a new special needs parent. I hope others with children facing challenges can relate. @MaryKForrest and I are learning from all your feedback. Thank you. @TODAYshow https://t.co/4PNoIhYg24 pic.twitter.com/AHDi5Dfx1I— Richard Engel (@RichardEngel) January 31, 2018
While managing Henry has been particularly challenging, Engel remains stedfast and loves his son unconditionally. He hopes his story will also motivate parents like him who have children suffering from Retts syndrome.
It’s not a story that anybody wants to tell. It is very difficult for us, but we wanted to raise awareness, to make other families with special needs children, children who are challenging, know that they're not alone.
Many special needs families wrote with advice after Henry’s story on @TODAYshow. They say to stay strong, to communicate with your partner, to enjoy your child everyday. I realized, isn't this what we should ALL be doing, always? https://t.co/fw8yJAhBI9 https://t.co/Zw0MM0IdPQ pic.twitter.com/AQwFclrcDZ— Richard Engel (@RichardEngel) January 30, 2018
This week, Engel posted a Tweet where he gave an update of his son’s condition. Henry’s motor skills are improving in leaps and bounds. Now, he can manage drinking with a straw on his own and can even hold a gaze.
Proud mom post: Henry at speech and language therapy today. He’s getting the hang of drinking from a straw and continues practicing a low tech version of eyegaze (soon to go high tech in addition) Go H!! pic.twitter.com/VjBrJqCRNn— Mary Engel (@MaryKForrest) June 13, 2018
Henry may still be a long way away from any real treatment, but in the time being, his loving parents are providing him all the care and attention he deserves.