I finally got a “Dada.” It was a long time coming, which made it all the sweeter — an unexpected reward.
Our son Henry is 3 and a half years old and has special needs. His physical and mental development aren’t on pace with other children. So when I got the Dada from him, I went a little wild.
To set the scene, I’d been away on a reporting trip, this time in Syria covering the fall of the Islamic State. The trip dragged on longer than expected. Damn ISIS. Unpredicted delays happen a lot in the news business. C’est la guerre.
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My wife Mary had been telling Henry I was coming home, but because of his condition it’s hard to know what’s sinking in. He still struggles with basic things like picking up a ball with both hands. He’s never been able to clap or point. I’d sent him video messages and photos, blowing him kisses and singing little good morning songs, so he’d been prepped for my arrival. But that’s not unusual either. I’ve done that before, but never gotten the welcome home Dada.
I came in late. Henry was already sleeping. In the morning, as he was yawning himself awake, I went to him and rubbed his hair, damp from sweat after a deep sleep. I pressed my cheek against his. “Good morning Henry. Good morn-iiing,” I sang. He likes music. Mary sings and dances for him all day long. Since Henry doesn’t walk and struggles to move independently, Mary is his personal entertainment system. She’s motivated to do it. The more stimulated he is, the more alert he is. The more alert, the stronger. The stronger, the better he does in therapy. The better he does in therapy, the sooner he can get new skills. So our apartment can look a bit like a cabaret with all of Mary’s jazz hands.
But I was telling you about the Dada. As I was singing good morning to Henry and reconnecting after a long trip away, he looked at me, locked eye-contact and said, clear as any word, “Dada.”
He didn’t just say it once, but two or three times. There was an urgency and excitement to it.
Dada. Dada. Dada!
Angels sang from on high. A crowd offstage erupted in thunderous applause. And somewhere, an actor humbly folded at the waist.
Henry had made the sound before. Da-Da, or Ga-Da, and even vaguely made it about me, when I was in the room with him or holding him close to my face. But this time it was stronger and more decisive. Dada was a single word and he was clearly looking at me, talking to me, addressing me.
I gave him a big cuddle thank-you. He likes that, but don’t we all?
To parents with typically developing children, a little Dada may not seem like a big deal. But for me it was a validation, an acknowledgment that he’s in there, knows me, knows that his mother and I are forces for good in his life, and above all, that he loves us.
Mary hasn’t gotten a clear “Mama” yet. Henry makes the sound — maaaa-maa! — when he needs something, or, more often, when he’s unhappy about something. So his maaaa-maa! is more of a “Mama come and fix whatever I need fixing. And don’t waste time because I need it NOW!”
I hope one day she’ll just get a “Hi Mama, it’s good to see you,” like my Dada. She deserves it. She really does.
Henry has a neurological disorder caused by the mutation of a gene called MECP2. The gene produces a protein, also, somewhat unimaginatively, called MECP2. It is far more common for girls to have a mutation of the gene; when they do, the condition is called Rett Syndrome. It’s a nasty disease. The girls start out normally, fooling their parents into complacency, letting them plan, in least in their minds, what their daughters’ lives will be like. Then around 2 years old, the syndrome kicks in and the girls fade away. They stop talking and lose the ability to control their hands, wringing them together so vigorously in an uncontrollable motion called hand-washing that they have to wear gloves to protect themselves. In boys, the condition is merely called a MECP2 mutation disorder. But for simplicity, people usually call it Rett Syndrome for boys, too.
While I’m not a scientist — I’d never heard of Rett Syndrome until Henry’s diagnosis — the best way it was described to me is that the MECP2 protein acts like the conductor of the brain’s orchestra. Without it, the musicians of the mind don’t play in sync. They don’t fire their synapses when they’re supposed to. They don’t store memories in the right cubbyholes. The musicians are all present. Henry’s brain isn’t damaged per se; the violinists and cellists are all there, ready at the foot of the stage, but they don’t know what to do. They mill around in his head, striking odd notes and chords, warming up for the big performance. We’re working on getting the conductor to show up for work so we can get the concert started. We want to hear Mozart.
More precisely, I should say, a brilliant researcher and her team are dedicating themselves to bringing order to Henry’s mind. They’re trying to find a way to boost the amount of MECP2 he produces, not only because they love our son, but because they think he may hold the key to solving many neurological disorders, helping countless children and adults with special needs, and of course, the families of those affected, too. The families need help. It is exhausting — and expensive — to take care of someone who needs everything, all the time. Mary’s job is harder than mine. She really could use a “Mama, thanks for everything” some days. I’m confident she’ll get one. In fact, I’m more confident now than ever.
The researcher leading the work on Henry is Dr. Huda Zoghbi, a Howard Hughes Medical Institute investigator, and a pioneer in genetic research who has won more major science awards than I can list here. She believes Henry can help her find a treatment — and dare I even tempt the fates by saying a cure — for MECP2 disorders. If she can do that, it would be a huge medical breakthrough, and not just for Henry and other Rett boys and girls. There are thousands of debilitating genetic disorders and they tend to follow a similar pattern. In each case, a mutated gene fails to produce the correct amount of a protein that the body needs. Protein levels in the brain are unforgiving. Dr. Zoghbi, the director of the Duncan Neurological Research Institute at the Texas Children’s Hospital in Houston, calls them “Goldilocks proteins” because their levels need to be just right. Too much or too little leads to massive brain malfunction or death. In her decades of work, Dr. Zoghbi — who discovered the causal link between MECP2 and Rett Syndrome — has never seen a mutation quite like Henry’s. She believes it is, at least for now, the only one of its kind in the world, and when trying to make scientific discoveries, rare is valuable.
We don’t know how long it will take for Dr. Zoghbi to have her next breakthrough, but she and her team are working hard. They are encouraged, and even optimistic about their chances. Understandably, Dr. Zoghbi is reluctant to pin down a timeframe, but generally she talks about years — a few years, and thankfully not decades.
Having a special needs child makes you savor the patches of sunshine you cross on the hard, and often lonely, road toward a cure: the doctor’s visits that don’t go as badly as expected, a solid night’s sleep, or a Dada three and a half years in the making.
To learn more about or support this research, go to DuncanNRI.org.
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