Richard Engel, the head 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.
According to a memorial to Henry on the Texas Children’s Hospital website, who was born in September 2015, his parents first noticed he wasn’t meeting developmental milestones when he was just a baby.
Doctors discovered he had a mutation in his MECP2 gene through a genetic test. Rett syndrome, which primarily affects girls after their first birthday and causes taught abilities to be lost as well as cognitive deficiencies, speech loss, and a variety of motor issues, is caused by the mutation, according to the hospital.
Since 2018, Henry had received care at the Duncan Neurological Research Institute of Texas Children’s Hospital.
Over the years, Engel has provided updates on Henry, writing essays in 2018 and 2019 on the family’s triumphs and heartbreaks.
What is Rett Syndrome?
Rarely, but occasionally, boys can also be affected by the inherited neurological illness Rett syndrome, which is incurable. Many developmental delays are brought on by Rett syndrome, including loss of speech and a variety of movement impairments.
According to the International Rett Syndrome Foundation, the inherited neurological condition is present in one out of every 10,000 female births and is detectable in infants between the ages of six and 18 months.
Rett syndrome appears to manifest itself in the majority of infants within the first six months of life and is often not identified until later in life. Additionally, the Mayo Clinic lists seizures, abnormal hand motions, and respiratory problems as additional Rett disease symptoms.