Leo Isn’t a Mistake. CRISPR Is Not the Fix.

Leo Isn’t a Mistake. CRISPR Is Not the Fix.

There’s a quiet horror that comes with reading headlines like:

“Scientists explore using CRISPR to remove Down syndrome postnatally.”

To some, it probably sounds like progress.

To me, as a mother to a child with Down syndrome, it feels like a punch in the gut.

Because the message isn’t subtle. It’s loud and clear:

“Your child shouldn’t exist.”

“This is a flaw we’re trying to fix.”

And let me tell you something:

Leo is not a flaw.

Leo is not broken.

Leo is not a mistake.

What is broken is a society that still measures people’s worth by how easy they are to raise, how closely they conform to a “norm,” or how efficiently they can be scanned, sorted, and erased.

Yes, I’ve been told to my face, in the street, by a complete stranger and in front of Leo:

“Did you find out too late to get rid of it?”

Yes, I’ve had people look at me with pity and say:

“Oh… is he your only one? I suppose that put you off having any more?”

And yes, I’ve seen those same kinds of people look stunned when Leo is wearing a school uniform,

as if he’s not entitled to an education.

Or when he picks up an iPad, reprograms the router, and outsmarts a full grown adult on their own device, before they’ve finished their tea.

Leo is sharp. He’s witty.He’s proud of who he is!

He’s clever with tech in a way most people wish they were.

And still, science is pouring time and money into figuring out how to erase people like him.

Let’s also confront this brutal truth:

Down syndrome is the only condition in the UK for which abortion is legally allowed up until birth.

Not 24 weeks.

Not third trimester.

Right up until the first contraction.

And what happens then? A 39-week baby, because that’s what it is, is quietly discarded.

I can’t even bring myself to imagine how.

Meanwhile, people with Down syndrome are living full, rich, brilliant lives.

Some drive cars.

Some are actors.

Some are professors, musicians, speakers, athletes, politicians, and work in pretty much every profession you can think of.

And many, like Leo, are smashing expectations laid down by professionals who clearly don’t know what they’re talking about, and who rely on outdated research from medical journals and textbooks of generations gone by.

I’m tired of the lazy assumption that children with Down syndrome are just sweet, harmless little mascots.

Yes, Leo brings joy.

But he also brings challenge, grit, defiance, and a determination that would make a Navy SEAL sweat.

I didn’t know Leo had Down syndrome until he was three days old.

He arrived two months early, tiny, poorly, but determined, and it took a while before anyone realised he had an extra chromosome.

But here’s the part that most people don’t know:

Only around 5% of conceptions involving Down syndrome survive to birth.

Let that sink in.

From the very first few cell divisions, most embryos are lost naturally or through selective termination.

So the fact that Leo is here, not just surviving, but thriving, is extraordinary in itself.

He’s beaten odds most people never even realise exist.

He is not here by accident.

He’s here because he fought for it.

And because I did too.

Two life-saving operations at birth.

Then he survived full open-heart surgery.

Then various illnesses and medically induced comas.

Then Covid.

He has fought for every inch of the life he has, and he earned his place in this world.

No gene editing tool, however precise, will ever convince me that he needs to be changed.

I don’t want “normal.”

I don’t want “corrected.”

I want Leo EXACTLY as he is.

And if the scientific community is truly invested in progress, it should start by learning how to value difference, instead of deleting it.

If you’re reading this and you’re shocked, good.

You should be.

Because behind every statistic is a child like Leo.

A person.

A life.

And none of them deserve to be seen as a problem that needs fixing.