3 months ago
16
How personal do I get? How vulnerable am I prepared to be? But there’s no shame in sharing. No shame in feeling things deeply. And maybe, hopefully even, there’s value in opening up conversations we’re not always sure how to begin.
My husband and I have two beautiful girls. Our youngest, Millie, lives with Angelman syndrome – a rare neurogenetic condition. People with Angelman syndrome often don’t walk or talk, and most will require lifelong care.
But Millie, who is turning five soon, has recently learnt to walk. Wobbly and wide-legged, she totters around the house, ricocheting off walls, knocking into furniture, laughing as she goes. It’s equal parts terrifying and magical.
With the rapid surge in artificial intelligence, I’ve found myself wondering what it might look like if Millie was able to run.
I’ve never seen anyone with her genotype run. Millie is a deletion case, the most severe of all the genotypes. Kids like Millie have a chunk of chromosome 15 missing, including the UBE3A gene; loss of this gene causes most of the syndrome’s effects.
With the rapid surge in artificial intelligence, I’ve found myself wondering what it might look like if Millie was able to run. Could I make a video of her sprinting across the backyard, wind in her wispy near-white hair, her sister chasing behind? Just a glimpse. Just a taste of a future that isn’t in my grasp.
But I haven’t done it. It’s complicated.
Maybe I’m too fragile to see something that might never happen. Perhaps I’m scared to imagine a life that’s not hers to live. But here’s the twist: biotech companies are working to change that narrative. Clinical trials are under way, and gene therapy is no longer just a pipe dream. It is the beginning of what might be a new era. Maybe she will run one day. Maybe she’ll dance.
And so, I choose not to see something I can’t unsee.
Will Millie always walk the way she does now – deliberate, unsteady, with all the force of someone trying very hard? Or will she one day need a wheelchair? For many like her, early walking doesn’t last – their bodies grow faster than their strength can keep up.
It’s a hard thing, this question of AI and imagination. Do we create images of people doing things they may never do? Can those images somehow evolve into memories, stitched into the fabric of our minds like childhood recollections, or do they remain half-true?
There is a company in Japan using AI to help people say goodbye to loved ones they’ve lost. In one example that stayed with me, a father whose daughter had died unexpectedly, used a generative-AI program to recreate her likeness. He was able to see her again, talk to her, and say goodbye. For him, it offered a moment of release, maybe even the first step towards healing.
Maybe I’m too fragile to see something that might never happen.
My mum passed away when I was 10. I’ve never used AI to see what she might look like now, as an older woman, as a grandmother to my kids. I haven’t used any tools to animate old photos. My memories of her are vague – soft around the edges, the way dreams are. But they’re mine. I’d rather hold on to those than overwrite them with something digital, something that might feel too sharp, too artificial, too cruel in its clarity.
Maybe that’s the line for me – the one between real and rendered. Between memory and make-believe. Sometimes I dream of Millie running. I’ve seen her sing with her sister in my dreams, words
tumbling from her mouth in a childish voice I can’t quite hold on to.
In one dream, I spoke with my mum. Only I had aged, and we were two adults walking and talking, folding time between our sentences. What we spoke about, however, I have no idea.
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Dreams aren’t real, but in a way they’re not so different from AI creations. Both involve our minds conjuring the impossible – moments we long for but can’t quite touch. But dreams arrive uninvited. AI is something we summon, and then shape. That difference matters.
I choose not to step into a version of the future that isn’t mine, at least for now. And that’s OK. We all find ways through hope and heartache. Maybe one day, when I’m old and soft around the edges, I’ll sit in a rocking chair and ask AI to show me the things I never saw, or things I’ve long forgotten.
Perhaps then it won’t matter if they fuse – if the real and imagined blur into one gentle reel. I have no idea what the future me will carry in her heart.
But for now, I know this: we’re entering an age when imagination and technology are merging more by the day. Where grief, memory, longing – things once held quietly inside – are being rendered in high definition.
And maybe the real question isn’t whether we can create the impossible. It’s whether we should – and what parts of ourselves we’re willing to give up in the process.
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