Richard Engel, the Chief foreign reporter for NBC News, said on Thursday that his son Henry, age 6, had passed away. The battle the youngster endured with a rare genetic disease had been openly discussed by Engel and his wife.
Henry, our cherished son, died, Engel posted on Twitter. "He glowed with an infectious laugh, the sweetest blue eyes, and a simple smile. He was always surrounded by our love, and he gave it to us in spades."
According to a memorial to Henry on the Texas Children's Hospital website, Henry was born in September 2015, and his parents first noticed when he wasn't meeting developmental milestones.
Doctors discovered he had a mutation in his MECP2 gene through a genetic test, that causes Rett Syndrome.
Rett syndrome, which mainly affects girls after their first birthday and includes cognitive deficiencies, speech loss, and a variety of movement issues.
He had been treated at the Duncan Neurological Research Institute of Texas Children's Hospital since 2018.
Dr. Huda Zoghbi who examined Henry's mutation, described him as "unique in so many ways," and had influence many of us by his silence battling for the syndrome.
We'll keep working as hard as we can to develop cures for this RETT Syndrome. We shall remember his life in this manner."
Engel stated this in an another tweet on Thursday: "Researchers are making fantastic progress using Henry's cells to help treat RETT Syndrome so that others don't have to suffer from this dreadful condition."
Engel and his wife had shared everything about the treatment and going around over the years “Both Joys and Heartbreaks”
However, Henry abode to heaven leaving behind his great influence on the family and doctors treating him.