How the 'Today Show' Gave Me Hope As the Parent of a Rare Child

I watch the “Today Show” every morning while I give my son his medicine and a bottle. In fact, I have NBC on a lot at my house. It’s my go-to for news, my favorite for local weather, and I’m a big “Today Show” fan. Naturally, I knew Richard Engel when his name was mentioned, and I was curious what “medical condition” his young son, Henry, was facing. Never in my thoughts did I imagine the story would hit so close to home.

I watched the story, and when I heard the diagnosis — Rett Syndrome — I grabbed my phone with my free hand and awkwardly typed, “Turn on the ‘Today Show!'” on Facebook. I hoped my other rare disease mom friends would see.

It isn’t every day you see a story on mainstream media about a boy with an X-chromosome linked condition. Like Henry, my son also has a rare, X-linked condition. It’s called Cdkl5 disorder and, like Rett Syndrome, it has a devastating impact on my son’s life. My son, like Henry, is unlikely to walk or speak. Most likely, he will never be independent. He has daily seizures that are resistant to treatment. My son is also severely visually impaired and has no functional vision.

Watching the story on television, I was overwhelmed with emotion. It’s an awesome feeling to connect with a stranger over a common experience. I was nodding my head “yes, yes” with empathy as Richard’s wife cried “no, no” at the despair of hearing the diagnosis. My heart broke for her. I knew that despair.

Richard went on to explain the research being done using his son’s cells. They say his son’s mutation is unique. In reality, many rare genetic mutations are one of a kind. No one on Earth has my son’s exact mutation either. However, the story shared that Henry’s cells might be helpful to science on the road to a cure. Whatever makes them unique, whatever makes them valuable, I feel grateful to Richard and his family. A cure for Rett Syndrome, I’m hoping, would mean a cure for Cdkl5 disorder and many other genetic conditions too.

The story aired on a Tuesday. Tuesdays mean feeding therapy in our house. Typically, my son and I do medicines and a bottle (with the “Today Show” in the background), then exercises on the floor, time in the stander, and breakfast before we leave the house. Watching Richard Engel’s story changed my morning. My son and I still followed our routine, but I did so with a hopeful heart that one day our boys may have a cure.

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