Written by Luis Canto E Castro
Multi-award nominated Disability and Accessibility Consultant

A high-profile family has recently shared the news that their twins have been diagnosed with SMA Type 1. If you felt your stomach drop reading it, you’re not alone. But what’s happened next? The comment threads, the hot takes, the headlines, and the language have also exposed something bigger… We are one community living with the same condition, but sometimes we experience the world from very different angles. 

Right now, we’re seeing two very real, very valid reactions collide, parents (especially newly diagnosed parents) who recognise the shock, fear, overwhelm, and raw grief that can hit in the early days. Then, the adults living with SMA who are exhausted by ableist narratives, “tragic”, “no quality of life”, “they’ll never…”, “better off…” and who feel personally wounded when SMA is framed as a life already lost. 

I would like to attempt to be the voice of reason. Not a watered-down “can’t we all just be nice” message, but a clear, practical, community-level reset. 

Because two things can be true at once. A new diagnosis can feel terrifying, even if treatments exist. Ableist language still causes real harm, especially to adults who are living proof that old predictions were wrong. 

First, we need to acknowledge and remember what a new diagnosis does to our brains. Whether we are parents or individuals living with SMA, there is still a huge, massive shock factor! When parents receive a diagnosis like SMA Type 1, they are often hearing it through a fog of medical language they’ve never encountered before, urgent decisions, worst-case scenarios, sleep deprivation, and shock (real, physiological shock).  

The uncomfortable truth is, we don’t know what they were told, how it was framed, what prognosis was emphasised, or how the conversation landed in that consultation room. Sometimes clinicians communicate with exceptional balance and hope. Sometimes they lean heavily into history. Sometimes they focus on risk to ensure parents understand the urgency. Sometimes parents only remember 10% of what was said, because that’s what trauma does. 

So, when you see a parent using language like “devastating”, “heartbreaking”, “our world has ended”… it might not be a judgment on disabled lives. It might simply be the sound of someone whose nervous system has been hit by a freight train. 

Secondly, adults with SMA are not being “too sensitive”. If you’re an adult living with SMA and those public reactions made you angry or sick to your stomach, that response makes complete sense. Because you weren’t just reading a celebrity story. You were reading the same old script that society has used for decades, disability as tragedy, disabled children as “angels” or “victims”, a future described as already over, and life reduced to assumptions about suffering. 

When that script is broadcast widely, it doesn’t just sting emotionally; it has consequences. It shapes how the public treats disabled people, influences policy and funding attitudes, impacts how disabled kids are seen at school, in healthcare, and in society. It also reinforces the idea that a disabled life is automatically a lesser life. 

Adults with SMA have fought hard to be seen as whole people, not cautionary tales and many adults have lived far beyond outdated “life expectancy” narratives, especially as standards of care and treatments have progressed.  

So no, this isn’t about “tone policing” adults in the community. It’s about naming a real harm. 

Now, SMA Type 1 in 2026 is not the same story it used to be, but it isn’t a promise either. We need to be honest but hopeful. The landscape has changed. In the UK, disease-modifying treatments for SMA are available, and there is ongoing work on access and commissioning arrangements (including managed access agreements and NICE reviews).  

We also know, from clinical experience and emerging evidence, that outcomes can differ significantly when treatment is initiated early, particularly for infants. But here’s the part we can’t pretend away, even with treatment, SMA Type 1 can still be serious. Babies respond differently, journeys vary, and complications can happen. Families may still face intensive care needs, complex decisions, and uncertainty. The goal is not to replace fear with fake positivity. The goal is to replace fear with informed hope, the kind that makes room for reality, but refuses the “their life is over” narrative. 

So, what do we do as a community, right now? This is another opportunity for all of us in the community to focus on actions rather than on feelings and emotions. If you’re living with SMA, in any shape or form, or are a long-standing community member, you don’t have to swallow your feelings. You don’t have to make yourself small to protect someone else’s comfort. But you can choose impact over impulse, especially when the parents are brand new. Lead with humanity, then educate. “I’m really sorry you’re going through this. I live with SMA, and I want you to know there is hope, and you don’t have to do this alone.” Use “I” statements instead of accusations. 

“When I read phrases like ‘no future’, it hurts, because my life is a full life. Here’s what I wish people understood…” Offer resources, not lectures. SMA UK has clear, UK-specific information on treatment, support options, and the facts and figures which helped my family/people I know. Correct ableism gently, but clearly. “It makes sense you’re scared”. At the same time, language matters, because disabled lives are not tragedies. That combination of compassion and clarity is powerful. 

If you’re a parent (especially newly diagnosed), if you’re reading this and you’re in that early-days storm, you are not expected to be an expert overnight. But here’s what I’ll say, plainly and with love… Your children are not a tragedy; your fear doesn’t make you a bad parent. Your words will land differently in a community where adults are living the life you’re describing. So, if you can, try shifting from life-ending language to uncertainty language. Instead of: “There’s no hope.” Try: “We’re terrified, and we don’t know what comes next.” Instead of: “Their life will be unbearable.” Try: “We’re scared about what this might mean for their health and comfort.” It’s not about being perfect but not accidentally hurting the very people who could become your strongest allies. 

A note for everyone watching the headlines, publicity can absolutely raise awareness for rare conditions, and that matters. It can drive curiosity, earlier recognition, fundraising, and pressure for better systems.  

But awareness without accuracy can easily become misleading, overly emotive, or driven by clicks rather than truth. That’s why SMA UK exists, to provide trusted, UK-specific, up-to-date information about SMA, treatments, and support..  

So, if you’re sharing the story, commenting, or discussing it, share resources and not rumours, avoid armchair prognoses, don’t turn disabled lives into symbolic suffering, and remember there are real people reading, including adults with SMA and parents awake at 3am spiraling. The standard we set now becomes the culture that new families meet later. 

Do you know what I really wish our community could be known for? A community that can say, “That language harms us”, and “We know you’re scared.” “There’s hope”, and “It’s okay to admit this is hard.”, “We’ll educate you” and “We won’t shame you for being human.” 

Because one day, it might be your friend, your cousin, your colleague, or your own family getting a diagnosis they never saw coming. And when that day comes, the tone of the community matters. 

How valuable would it be if, consistently, newly diagnosed families were met with steadiness, not judgment? Adults with SMA are respected, not erased? Hope is offered without denial, and nobody has to fight their own community while they’re fighting the condition! 

If you’re newly diagnosed, I see you. If you’re an adult with SMA, I see you too.