NBC News chief foreign correspondent Richard Engel has seen some pretty harrowing things in his storied career. But learning that his son, Henry, was battling a rare form of Rett Syndrome was "the worst day of my life."
Engel was in South Korea when he got the news that the genetic scan had come back with the life-altering result. "I called the doctor and he said, 'We found something. It's very, very severe. It's life long, not treatable,'" Engel told NBC's Today. "I was in a state of shock. I got back into this convoy, shaking."
When Henry wasn't reaching developmental milestones, at first Engel and his wife, Mary Forrest, just attributed it to Henry being a "late bloomer." But when Henry was almost two and still wasn't talking or clapping his hands, they decided to have a genetic test done just to make sure.
Rett Syndrome (or RTT) is a rare genetic condition that almost exclusively affects girls. For most affected by the disorder, they will likely never learn to walk, talk, or be able to care for themselves. Since the genetic mutation involves a gene on the x chromosome, boys are usually affected more severely, since girls have a second x chromosome that remains unmutated.
Since the diagnosis in September, Engel and his wife have struggled with how to approach the devastating news.
But now, they're sharing their story in the hopes of bringing awareness to the disorder, and to sow some seeds of hope.
Early Tuesday morning, Engel shared a thread of very personal tweets revealing Henry's condition to his followers:
A very personal series of tweets this am. We recently learned our 2yr old son Henry has a serious genetic disorder,… https://t.co/D2ZnjoGWfs— Richard Engel (@Richard Engel) 1517313940.0
Doctors say our son Henry’s condition means he’ll unlikely walk, talk or be able to do things like dress and feed h… https://t.co/ZyefETbt03— Richard Engel (@Richard Engel) 1517313998.0
Henry was diagnosed with rare mutation of a gene that, usually in girls, causes RETT Syndrome. His story coming up… https://t.co/IU9wUvTY1y— Richard Engel (@Richard Engel) 1517314074.0
Like other parents of special needs children, we’re adjusting, but know others have gone through it and more. We ca… https://t.co/UHiXa8waIF— Richard Engel (@Richard Engel) 1517314160.0
My wife @MaryKForrest and I going public to raise awareness, support special needs families and genetic research.… https://t.co/ioJNfvJg4k— Richard Engel (@Richard Engel) 1517315229.0
Engel also broke the news that Henry's rare form of Rett Syndrome may actually help lead to a viable treatment for Henry and others affected by the disorder:
The news is: there is hope. A top RETT doctor believes Henry’s mutation could lead to a treatment for him and other… https://t.co/DUEo1TI4ev— Richard Engel (@Richard Engel) 1517315274.0
For more info about the research being done with Henry and how it could hopefully help him and others, the lab is… https://t.co/Yit3P7XKwB— Richard Engel (@Richard Engel) 1517315353.0
As Engel mentioned in his tweets, he also sat down with Today's Savannah Guthrie and Hoda Kotb to discuss his family's journey. And it certainly wasn't easy for them to do:
“It’s lonely. Hopefully other people maybe will see this and maybe feel a little less alone and we will too.”… https://t.co/8lQ4uRvGXk— TODAY (@TODAY) 1517318387.0
But they're remaining as optimistic as possible:
“His mutation is potentially one of a kind. The doctor thinks it’s the first one in existence.” @RichardEngel says… https://t.co/cVuwZLbGWA— TODAY (@TODAY) 1517318500.0
Many on Twitter, including several of Engel's colleagues, commended Engel and Forrest for sharing their story:
I’ve never been more proud of the courage of my friend and colleague @RichardEngel and his wife Mary. The story the… https://t.co/STSYj9bwRw— Savannah Guthrie (@Savannah Guthrie) 1517315835.0
.@RichardEngel shares his son's medical journey: “It’s not a story that anybody wants to tell, and it was very dif… https://t.co/eWCKxI40sZ— Micah Grimes (@Micah Grimes) 1517318823.0
"He gives out what we put in and more." - Thank you @RichardEngel for sharing. Thank you, Dr. Zogby for learning. T… https://t.co/52CJLuwSHB— Casey Jones (@Casey Jones) 1517320319.0
And some shared their own inspiring stories as well:
@TODAYshow @RichardEngel I have a child with Down Syndrome and the journey is challenging and rewarding at the same… https://t.co/j2CK1oQLuA— Melissa Dominick (@Melissa Dominick) 1517323003.0
And Engel responded to the outpouring of love with the level of class and compassion that he's known for:
So happy so many people connected with Henry’s story this morning @TODAYshow. Thank you ALL for your support. For… https://t.co/mSXdGBwdpw— Richard Engel (@Richard Engel) 1517321679.0
As one Twitter user so eloquently stated, "we're pulling for you":
You can watch the entire Today segment below: