In a lifetime, names are some of the most important words we’ll ever know. Picture that expectant mom and dad- sometimes they’ve known for years what they wanted to name their baby-a family name, a favorite relative, a junior, a name they heard in passing as a child that stuck with them all those years- or they’ve got books and lists and they sit snuggled up on a couch, looking at each other, crossing off name after name, hands on a belly full of life and promise, and when they come to “the one” they get to say “hi” for the first real time. It’s no longer just “hi, baby”. Even the spelling is important. It’s an intimate, thing, a name. The difference between Sean, a link to Irish heritage, and Shawn, that while nice, is not like part of my blood, and was never going on my son’s birth certificate, despite insistance by his father.
And that baby will grow and become known by many names-nicknames on the baseball field and special sweet ones only one person uses. Mr. or Mrs., Mom, Dad. Names are a comfort, but imagine if you didn’t know your name. That horrifies me, not knowing WHO you are. Because a name is all that and so much more. And, that need does not belong to just people.
When Katie first changed from a happy 15 month old to a child who could no longer talk, nor use her hands, who screamed for hours, developed seizures, lost so much weight and became a mere shadow of that happy child, there was no name to put with it. Having no name is like being in an abyss, a swirling black hole of “unidentified”. I will never forget a doctor telling me, “we may never know”. I can recall the horror….no name??? No NAME??. EVER?? And even when eventually we knew in our hearts that name was Rett, the relief of hearing it for real cannot be overestimated. A name. Identifiable. Knowing what we were fighting. A comfort, a relief, even though it was horrible, it had a name.
And now, a different name. Trofinetide. Welcome, and thank you for letting us put out our big, reaching, hopeful hand and have you wrap your new, infant fingers around it. The David to the Goliath of Rett. A champion. Though, NNZ-2566 did have a catchy kind of rhythm, I like this new name, even though I have no clue how to say it, I’m sure, said correctly, it just rolls off the tongue.
Colleen English, founder of http://www.Rettland.org put it succinctly …” I like the sound of that…Trofinetide, as in, we are using Trofinetide as a treatment for Rett syndrome, that sounds very nice.”
It does, indeed.