A whirlwind trip (or rescue mission, as Jonathan likes to say) to New England was not on my 2025 bingo card.
And yet.
We are at max dose of Xcopri, and while it has given us a respite, it has not been curative for Trevor. We have slowly watched as his seizures are creeping back up in number and visual intensity.
Meanwhile, I've been observing anecdotal stories about the benefits of red light therapy flowing from families who — like our own — will try what appears to be desperate measures on their own. I am of the persuasion that families are where the best science starts, and is always more honest and moves faster than the mainstream.
As we started diving a little deeper, we learned of an adjacent study launching. In Boston. Like, right this minute.
As I shared with the medical team, we wouldn't have made such a crazy move if we didn't have a little glimmer of hope in our hearts.
Hope springs eternal.
— Alexandar Pope
And yet.
We are at max dose of Xcopri, and while it has given us a respite, it has not been curative for Trevor. We have slowly watched as his seizures are creeping back up in number and visual intensity.
Meanwhile, I've been observing anecdotal stories about the benefits of red light therapy flowing from families who — like our own — will try what appears to be desperate measures on their own. I am of the persuasion that families are where the best science starts, and is always more honest and moves faster than the mainstream.
As we started diving a little deeper, we learned of an adjacent study launching. In Boston. Like, right this minute.
Up and back in four days (including schlepping through the weather all day yesterday!) — and here we are, ready to give this a go.
As I shared with the medical team, we wouldn't have made such a crazy move if we didn't have a little glimmer of hope in our hearts.
Hope springs eternal.
— Alexandar Pope
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