NBCNews Chief Foreign Correspondent, Richard Engel, opened up about one of the hardest phone calls he ever had to receive– the call where he received the diagnosis of Rett syndrome for his son, who is only 2-years-old, reports People. While his wife, Mary, and him have spotted signs of slow developmental progression for little Henry, they still didn’t anticipate that his future would be severely limited by physical and mental disabilities.
While Richard was working away with the military convoy, he received the news. The mix of emotions made it nearly impossible for him to concentrate. He expressed that since it was the middle of the night, a public affairs officer was attempting to keep everyone awake by sharing stories of his some playing football and taking the SATs. Richard couldn’t help but to think that his son would never get to do those things. It was devastating.
Rett syndrome is a rare genetic disease that affects a patient neurologically, leading to problems with coordination, speech, seizures, and other symptoms. To learn more about it, click here.
Richard and Mary knew that their future would be much different after this diagnosis. They had to have the hard conversations: when do we get him a wheelchair? How do we care for him once we are gone? While they expect Henry to outlive them, they still want to make sure he’s taken care since he might not be able to live independently. But, they have not lost hope.
Richard continued to investigate on the disease, reaching out to doctors and hospitals that have researchers looking for a treatment or cure. A doctor from Texas Children’s Hospital and Baylor College of Medicine was able to identify only a partial mutation in Henry’s case, which is something they have not come across before.
The doctor, Huda Zoghbi, is determined to dedicate his research to Henry and Rett syndrome, as they believe he could be the answer to so many questions. This means hope for Henry and hope for others.
Richard and Mary continue to celebrate the small wins every day. They might not have the dynamics of the family the expected, but they are beyond grateful to have their son Henry. Now, here’s to finding a cure.