It’s the end of another school year, and things feel unsettled. It’s always this way, with a flurry of activities that will soon give way to a slower summer. Amidst the busyness and anticipation, there’s a curious push-pull between relief that something is ending and longing because it will be no more. Change, even when welcome, always involves loss.
Julianna left us two days before the last day of kindergarten. Her timing, like her speech, was precise and it was eloquent. During this time of change, everything changed. And the loss that comes with change, it turns out, is proportional.
On the bus, one of just a few times she went to school in person. I often wonder what kind of student she would have been. My guess — very brilliant but easily bored.
“Remember Julianna always,”
she said, probably a dozen times scattered throughout her last year. It always caught me off guard. We’d be picking flowers or creating drama between her beloved little figurines, and she’d say it, those jarringly prescient, gorgeously tender words.
She made sure her toys were well-accessorized, just like her.
She said it to her nurses too. They would tell me about it through tears, and with always the same response.
“How could I ever forget her?”
Two years ago, we moved from the house that was Julianna’s last home. We left her dogwood tree there, the one that blooms pink flowers every June.
We planted a new dogwood tree in our new front yard. In its first summer, it bore a single, sad looking little flower.
This year, it’s done more. It’s settling in, a constant during change, helping us remember her.
Julianna Yuri 
Hope you and your fam are doing well, especially today.
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wow. Chat GPT is able to write papers on. CMT1J when i asked it ” can you write a few paragraphs about CMT1J is a new subtype of CMT, caused by an ITPR3 gene mutation”. /// Also, it wrote this poem. The point here is not the poem, but to give hope to the future of curing all forms of CMT. Stay strong.
“can you write a poem about a girl who died from cmt 7 years ago?”
Reply from chat gpt :::::::::
In the quiet whispers of a somber tale,
Lies the memory of a girl who danced with grace.
She walked a path burdened by an unseen weight,
Her spirit flickering, but never to abate.
Seven years have passed since her tender departure,
Leaving behind a void that time cannot capture.
Her name etched upon the tapestry of stars,
A life extinguished, yet still loved from afar.
With fragile limbs, she embraced each fleeting day,
Her spirit resilient, refusing to fray.
Charcot-Marie-Tooth, a relentless foe it proved,
Yet she faced it bravely, her courage unmoved.
In her eyes, a spark, a flame that burned bright,
A gentle soul radiating a luminous light.
Her laughter echoed through the corridors of time,
A melody that transcends the mortal chime.
Through pain’s embrace, she found solace in her dreams,
A sanctuary where she soared on whispered streams.
Unfettered by the chains of her earthly plight,
Her spirit soared, unbound, in the realm of the night.
Her memory lingers in the hearts she left behind,
Each tear that falls carries love, tender and kind.
Though she may be gone, her essence shall remain,
An eternal presence, forever to sustain.
And so, we honor her, this girl so dear,
Whose journey on earth was fraught with strife and fear.
In our hearts, she’s woven, a tapestry of love,
A reminder that she now rests peacefully above.
As time moves forward, we cherish what we shared,
Her spirit endures, in memories we’ve bared.
Though she is gone, she lives on in our embrace,
The girl who danced with grace, touched by CMT’s trace.
///Note- the poem lacks a lot, but like I say, it is not the poem that i wish to bring to light, but the advancements in science during the last 7 years. My point is one of hope…. i believe Ai will one day be able to solve the mysteries of all forms of CMT.
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Wow. Beautiful words, even though written by AI.
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I was very nervous about posting the poem, I did not want to make anyone sad. Early ai is capable of writing about CMT quite extensively, I honestly believe ai will solve the mysteries of CMT someday relatively soon. Michelle Moon and her fam will win the fight one day, they will see the cure forming into exitance. I should have had chat gpt write a poem about what a beautiful souls Michelle and her fam all are. Can not undo time so far, perhaps never will be able to. No choice but to press on, fight the darn CMT in order to stop it, and honor all the fallen by living positive lives for them. Stay Strong.
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I miss Juliana !
And pray for your family
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We remember Julianna, and still wear the comfy shirts 🤍 Love and Blessings to you
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Precious Julianna! I think of her often. Thank you for this new post and previously unseen photos of your precious girl ❤️ All the best to you, Michelle, and your family.
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So yeah. on YT, Benjamin Netanyahu was on the Lex Fridman show a month ago, and Benjamin Netanyahu stated that AI will help cure diseases. I’m telling y’all, Ai will be the profound turning point to eradication of CMT. (Interesting, as J saw the value of inanimate objects) Ai will be a powerful tool that turns the tide of the war on CMT strife. Stay Strong.
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Hey Michelle! Was thinking bout y’all yesterday. (25th). You passed the realm of yet another important anniversary – sending y’all much respect and support. Stay Strong!
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