Richard Engel and Mary Forrest.Photo: TODAYshow/Twitter
NBC News chief foreign correspondent Richard Engel and his wife Mary Forrest areremembering their son Henry, who died in August at 6 years old.
On Thursday, the couple visited TODAY and opened up abouttheir late son, his disease and the new balcony dedicated to his memoryat the hospital where he was treated in Houston, Texas.
Engel announced the death of Henry in August after his years-long battle with Rett Syndrome, a rare genetic neurological disorder.
“Our son Henry was our everything,” Engel said in a video about his son aired on TODAY. “Sweet, beautiful, and determined. He was also unlucky, born with a rare genetic disease called Rett Syndrome.”
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“A single devastating typo in his genetic code robbed him of the ability to walk, talk and control his body. It also caused numerous underlying health conditions including impacting his breathing,” he continued.
Engel also talked about his wife and son’s strength. “But my wife Mary and I — she was the main caregiver — never quit for a moment. And neither did Henry. With regular therapies to keep his body moving and his mind active, he was making progress. Learning to take a few steps in his walker and communicating with cards and a computer.”
After developing dystonia, uncontrollable shaking and muscle contractions, his underlying health conditions got much worse, and soon, “it was too much,” Engel said.
Richard Engel and son Henry.Courtesy Richard Engel
“But Henry’s journey continues. This week in Houston, at the Duncan Neurological Research Institute they celebrated him, dedicating a balcony in his honor,” shared the journalist, 49.
“Henry had no bad qualities. Nope, none. Zero. But the one I was thinking about today was his tenacity. He was so hardworking and he had to do so much that a child should have to necessarily have to do. But he did it. And with a smile. He never gave up.”
While many other children suffer from Rett Syndrome, Henry had a specific genetic mutation never seen before.
“We lost our son, our Henry. He was almost 7 years old,” Engel said. “But he will always be with us, even now he’s hard at work to help other children whose lives are more difficult than they should be.”
“We have a vendetta against the syndrome and we want to cure it,” Forrest said about the disease. “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.”
RELATED VIDEO:Richard Engel Announces Death of ‘Beloved’ 6-Year-Old Son Henry
Engel shared the heartbreaking news onTwitterlast August. “Our beloved son Henry passed away. He had the softest blue eyes, an easy smile and a contagious giggle. We always surrounded him with love and he returned it, and so much more,” Engel wrote alongside a sweet photo of his son.
Engel linked to the memorial page in a follow-up post, writing, “Researchers are making amazing progress using Henry’s cells to help cure RETT Syndrome so others don’t have to endure this terrible disease.”
source: people.com
