Why Speaking Up About Disability and Diagnosis Matters

@jesynelson appears on an Instagram video talking candidly about her daughters' diagnosis with her followers

When Jesy Nelson (of Little Mix fame) recently shared in an Instagram video that her twins have been diagnosed with SMA type 1 and that doctors have told her they may never walk, the response was immediate and visceral. Heartbreak. Fear. Love. Support. And for many parents already living in the world of complex or additional needs, a deep, familiar ache.

Because this isn’t just celebrity news. This is a story that plays out quietly in hospital rooms, scan appointments and consultant letters every single day.

There is a particular kind of grief that comes with an unexpected diagnosis. One that doesn’t always have space to exist. It’s not a lack of love for your child – it’s the mourning of the life you thought they might have, the ease you imagined for them, and the parenthood journey you believed you were stepping into. It’s learning, often overnight, that your path will look very different.

Voices like Jesy’s matter because they make that grief visible.

Too often, parents of disabled children are expected to be endlessly grateful, relentlessly positive, and quietly resilient. Public conversations rarely allow room for the fear, the anger, the confusion, or the deep sadness that can sit alongside fierce love and devotion. When someone with a platform speaks honestly about those emotions, it gives others permission to acknowledge their own.

The reality is that congenital anomalies and complex medical needs are far more common than many people realise. What differs wildly is the level of support families are able to access once those needs are identified.

Not every parent carer comes from a background where private therapies, second opinions or specialist treatments are financially possible. Not every parent has the confidence, energy or knowledge to push back when their local authority says “no”. Not every parent’s first language is English, yet they are expected to navigate an overwhelming medical landscape filled with terminology that barely makes sense even to native speakers.

Early support, clear information and accessible resources can be life-changing. They can mean the difference between a parent feeling lost and isolated, or informed and empowered. Between a child missing out on vital intervention, or being given the best possible chance to thrive in their own way.

That’s why representation matters. And why community matters.

Jesy may never read this. But someone else going through what she is, might. Someone sitting in the aftermath of a diagnosis they didn’t see coming. Someone googling late at night, trying to make sense of words they never expected to learn. Someone wondering if they are allowed to grieve while still loving their child with every part of themselves.

To that parent: you are not alone. This world may feel unfamiliar and frightening right now, but there is a community here that understands. One that will share knowledge, translate the jargon, stand beside you when you’re told “no”, and remind you that your feelings are valid.

This may not be the parenting journey you imagined. But you do not have to navigate this new normal on your own.