NBC News chief foreign correspondent Richard Engel went on the Today show Tuesday morning, along with his wife, and made a surprising revelation: Their young son suffers from a lifelong, incurable genetic condition.
Engel’s son Henry was diagnosed with a variation of Rett syndrome around his second birthday. Engel says he and his wife, Mary Forrest, understood that something wasn’t right when close to the age of 2, Henry couldn’t talk, walk, sit up straight, or clap his hands. After visiting several doctors, they finally got a diagnosis: Rett syndrome.
Children with Rett syndrome usually have normal development up to a certain point during their first year of life, until they begin to lose motor and cognitive skills. The genetic brain disorder almost always affects girls and does not have a treatment, according to the U.S. National Library of Medicine. “It’s not just delay. It means lifelong, permanent, untreatable physical and intellectual impairment,” Engel said. “Unfortunately, the more we learned about it, the worse the news got.”
Engel says doctors have told the couple that Henry will likely never walk, talk, or be able to dress himself, and he’ll probably have the mental capacity of a toddler for the rest of his life. He also may suffer from seizures and rigidity as he gets older.
Henry receives daily physiotherapy and visits the hospital twice a week for treatment to help stimulate his senses. Forrest left her job as television producer to care for her son and says she’s constantly trying to work on his motor skills. “I’m basically his manager for that and cheerleader,” she said. “It gives me purpose, and it’s important. I see it helping him.”
The couple also opened up about how difficult it is to have a special-needs child. “It’s not a story that anybody wants to tell. It is very difficult for us, but we wanted to raise awareness, to make other families with special-needs children, children who are challenging, know that they’re not alone,” Engel said. “It can feel very lonely, when you go down the street and you see other children behaving normally and knowing that his life and our life is never going to be exactly like that.”
Forrest said that while opening up about Henry’s health has been “painful and very personal,” she and Engel hope they can help others by talking about it. “It’s lonely, so hopefully other people maybe will see this and feel a little less alone — and we will too,” she said.
It’s not uncommon for parents of a special-needs child to feel lonely — in fact, there are several websites and chat rooms online dedicated to the topic. Gail Saltz, MD, a psychiatrist and the author of The Power of Different: The Link Between Disorder and Genius, tells Kasy Tech Lifestyle that the loneliness is often due to a few different factors. Parents of a special-needs child may feel upset when they hear fellow parents talk about their child’s normal development and pull away as a result; they may not feel comfortable being public about their child’s disability, or other parents may not understand the child’s disability and thus steer clear, she says.
It can also be hard to understand that there are actually others going through the same thing as you — especially if your child has a rare condition, licensed clinical psychologist John Mayer, PhD, author of Family Fit: Find Your Balance in Life, tells Kasy Tech Lifestyle. “Our immediate reaction is to feel alone and that we are the only ones experiencing this suffering,” he says.
Parents of a special-needs child also simply just don’t have a lot of spare time to connect with others — their lives revolve around treatments, therapies, and medical care, which doesn’t leave a lot of time for much else, Mayra Mendez, PhD, LMFT, a licensed psychotherapist and program coordinator for intellectual and developmental disabilities and mental health services at Providence Saint John’s Child and Family Development Center in Santa Monica, Calif., tells Kasy Tech Lifestyle.
Luckily, there are a few things that can be done. Mendez recommends joining an association or society that’s specific to the child’s condition. Many of these societies have parental support groups and offer ways for parents and patients to connect, she says. If the condition doesn’t have a specific organization affiliated with it, Mendez recommends asking doctors if they know of support groups for families in similar situations. “People working for and with these conditions usually know a lot of resources,” she says.
And, as Forrest said, talking about it can help. “The key to coping and soothing these feelings is sharing your story with others,” Mayer says. Of course, everyone is different. Some people may benefit from starting a blog to update friends and family about the child’s condition and progress while others will do best with just talking with a close friend or therapist, Mayer says.
Although Engel and Forrest admit that their life is harder than they anticipated, they said Henry’s health struggles have brought them closer together. “We’re all we’ve got,” Engel said. “We’re all he’s got right now, so we need to be a team.”