← DAYBUE’s Day is Almost Here!It’s a Brand New Day(bue)Posted on
April 17, 2023 by
melelllan
The words I have waited for for over 9 years- “(trofinetide) is now available for the treatment of Rett syndrome in adult and pediatric patients two years of age and older in the United States” See Acadia’s announcement-
HERE!Starting today, DAYBUE is available to be prescribed!!! I know that many parents have their doctors onboard and are getting this prescription in today and that means by this time next week girls AND boys will be given an actual chance to fight Rett syndrome where it lives-in the brain. Even though my spirit lives for words, I think they will fail me as I try to describe what this means to me. I won’t dare try to say “what it means for Rett parents and children” because I won’t speak for them, it’s not my place.
I once took a hike one early morning. It was fairly arduous. It wasn’t the smartest thing to do either because it was bear country and I was all alone, but I wanted to see the falls at the top of this mountain. I grabbed a walking stick, tackled it and up I went. Rett syndrome is like that mountain. It’s dangerous, it’s full of obstacles, it’s not an easy path at all. When I entered Katelin in that first trial all those years ago it was just one part of the mountain to get over. It wasn’t easy but I had a walking stick- so many people who reached out to help me over that hurdle.
Since Katelin was tentatively diagnosed at the age of 18 months, I have put one foot in front of the other; I’ve stumbled; I’ve cussed and screamed at the world; I’ve bled; I’ve not been at my best so often it pains me to say. I dragged my two other children with me up most of that damn mountain while I carried Katelin. They had to scramble as best they could and they have their own scars to show for it.
But there’s been a part of that mountain I’ve climbed alone. This blog, my advocacy for Trofinetide, now DAYBUE, every article read, researched, broken down, every result picked over and each piece of information gleamed between the lines. I’ve pulled myself along, grabbing hold of every tree for support, digging my hands in the dirt to get to THIS DAY for Katelin, for her siblings, for all the children and all the siblings and parents that have had their own mountains to climb.
I wrote a poem (of course I did, lol. ) about that climb and I think it comes close to saying how I feel today.
Mist in the MountainMist in the mountain
A church on the hill
Peace descending,
All is still.
Green all around me,
Silence abounds,
Except for my step
On solid ground.
Mist in the mountain
Brings rain on the wind
Washing me clean
And cooling my skin.
Grandeur and harmony
Lay out ‘cross the land,
Beauty to savor
Untouched by Man.
Mist in the mountain
Nature’s amazing grace-
Is it mist from the mountain
Or tears on my face?
M. Lancaster
It does, in deed, feel like a “brand new day”
(20min delay)