At KmotivationSA, I use my lived experience to spark meaningful conversations, challenge systems, and champion change. I write this reflection not only as someone living with spinal muscular atrophy (SMA), but as an advocate, speaker, and author who has spent years raising awareness around rare diseases, accessibility, and equity — particularly within the South African context. This piece holds space for compassion, hope, and honesty, while calling for greater awareness, earlier testing, and fair access to life-changing treatment.
Recently, a well-known UK musician publicly shared that her twin children have been diagnosed with spinal muscular atrophy (SMA). Her openness has sparked global conversation — and as someone who lives with SMA, it’s a moment that has stayed deeply with me.
Spinal muscular atrophy awareness is not just about visibility — it’s about understanding the real, lived experiences behind the diagnosis. Awareness must include conversations about early testing, access to treatment, and the very real disparities that exist between countries, healthcare systems, and socioeconomic backgrounds.
First and foremost, I want to say this clearly: I fully support her.
No parent should ever have to receive a diagnosis like this. To hear that both of your children have a rare, life-altering condition is something I would not wish on anyone. As a woman, as an advocate, and as someone who understands SMA intimately, my heart is with her and her family as they navigate something incredibly difficult.
Her decision to speak publicly matters. Awareness matters. Testing matters. Listening to your instincts as a parent matters. Especially in the rare disease space, where patients and families are so often their own best advocates. As she herself acknowledged, she knew something was wrong, and she pushed for answers. That persistence saves lives.
At the same time, I believe we need to hold space for a broader, more complex reality.
Access to testing and treatment is not equal.
The truth is that her children are in an extremely privileged position; geographically, medically, and financially. They live in a country where testing is more readily available and where life-changing medication can be accessed quickly. That early intervention could dramatically alter their life trajectory, and that is something to celebrate. Every child deserves that chance.
But for many families, especially here in South Africa, this is not the reality.
SMA is still widely misunderstood and underdiagnosed. Newborn screening is not routinely available. Testing is often delayed or inaccessible. Treatment is staggeringly expensive, and for most families, simply out of reach. Many parents spend years fighting for answers, fighting for support, and fighting for hope, often while watching their children deteriorate.
For individuals like me, this kind of public story can be both hopeful and deeply triggering.
I was given a life expectancy of five years old. Today, I am 28. I have a full-time career. I am a motivational speaker. I’ve written a book, Finding My Feet. I advocate for disability inclusion, accessibility, and rare disease awareness. I have built a life filled with purpose, joy, challenge, and meaning, all while living with SMA, without early access to treatment.
That perspective matters too.
SMA is not a death sentence. It is not the end. Many of us live full, rich, fulfilling lives with or without treatment. Treatment is life-changing, yes, but so is dignity. So is access. So is belief in a future beyond fear.
What I hope this moment brings is not just sympathy, but action.
I hope it leads to better awareness and earlier testing, especially newborn screening.
I hope it leads to policy change and equitable access to medication.
I hope it leads to healthcare systems listening more closely to patients and parents.
Because awareness without access is not enough.
If this public story can help even one family get answers sooner, one child get support earlier, or one policymaker push for change, then it matters. That is all anyone in the SMA community has ever wanted.
If spinal muscular atrophy awareness is to truly make a difference, it must lead to action. Action that improves testing, challenges policy, and ensures that where a child is born does not determine whether they have a chance at treatment or support.
Hope, yes.
But also honesty.
And ultimately, equity.
