Dear Reader,
I don’t know who you are. Perhaps you’re a doctor, someone working in healthcare, someone who reviews funding applications, or simply someone who happened to find this letter.
My name is Kerry, and I live with Spinal Muscular Atrophy (SMA). Before you see my diagnosis, before you see reports, costs, or policies, I’d like you to know the person behind them.
Whoever you are, thank you for giving me a few minutes of your time.
I’m not writing this letter because I’m looking for sympathy. I’m writing it because before you make another decision about another person living with a rare disease, I’d like you to know who we are beyond the diagnosis.
I’m a daughter, a sister, a partner and a friend. I laugh too loudly at bad jokes, I love coffee, I treasure time with the people I love, and I dream far more than I probably should. I’ve written a book, I stand on stages sharing my story, and I’ve dedicated much of my life to advocating for inclusion, accessibility and hope. My life isn’t perfect, but it’s a life I’ve worked incredibly hard to build, and one that I am deeply proud of.
I’ve lived with it my entire life, so I have never expected life to be easy. I’ve learnt to adapt because I had no other choice. Every obstacle simply became another problem to solve. I found different ways of doing things. I celebrated the victories that other people might never notice. I refused to let my disability become the only story anyone knew about me.
For a long time, that was enough. Until it wasn’t.
Not long ago, I sat in front of a glass of juice. It was exactly where it had always been, sitting on the table with a straw waiting for me. I’d taken that same sip thousands of times before without ever thinking about it. It was an ordinary moment on an ordinary day.
I looked at the glass and lifted my eyes to the straw. Then I tried to lift my arm.
Nothing.
I tried again, convinced that my body simply hadn’t listened the first time. Then again. I remember staring at my hand, silently willing it to move just a little further.
It wouldn’t.
Eventually, someone else picked up the glass and held it while I took a sip. To anyone else, it probably looked like a small act of kindness.
To me, it felt like grief.
I wasn’t crying because I needed help drinking a glass of juice. I was crying because I realised I had just lost another piece of my independence.
People often imagine that a progressive disease changes your life all at once. It doesn’t. It changes your life in moments so small that nobody else notices. It steals your independence quietly. One sip. One button. One hug. One toothbrush. One ordinary moment after another until one day you realise your life has become a collection of things somebody else now does for you.
That is the part people don’t see. The hardest part isn’t living with the disease. The hardest part is asking for help.
Every single time.
As my body became weaker, I started believing something I would never say to another person. I began telling myself that I was failing. Even now, I know that isn’t true. I know my body is changing because of a disease I never chose. But grief isn’t logical. It doesn’t whisper facts; it whispers fear. It convinces you that because you’ve lost some of your independence, you’ve somehow lost part of yourself.
The truth is, I haven’t lost who I am. I’ve lost some of the ways I’m able to express who I am. That is a very different kind of loss.
About five years ago, I first heard about a medication that could slow the progression of SMA. People often assume that I must have been overwhelmed with hope.
The truth is, I wasn’t. My first thought was, “That’s not for people like me.”
Not because I didn’t believe it could help, but because it felt impossibly far away. It wasn’t a question of whether it existed. It was a question of whether someone like me would ever realistically have the opportunity to access it.
So I carried on.
I adapted.
I kept working.
I kept speaking.
I kept writing.
I kept pretending that if I worked hard enough, perhaps I wouldn’t notice what I was losing.
Eventually, pretending became impossible.
People often remind me that this medication isn’t a cure.
They’re right.
It isn’t.
But I have never asked for a cure.
I don’t dream about walking.
I don’t dream about waking up in a different body.
I dream about staying in the life I’ve already built.
I dream about writing another book. Giving another talk. Making my family laugh until we cry. Spending ordinary afternoons with my friends. Watching another spring arrive. Having the opportunity to continue making a difference while I still can.
Who wouldn’t want a little longer?
Living with a rare disease has taught me that sometimes the greatest battle isn’t against the disease itself. Sometimes it’s against the feeling that you have to keep proving your life is worth investing in.
Worth treating.
Worth protecting.
Worth fighting for.
I’ve lost count of how many forms I’ve completed, how many emails I’ve written, how many appointments I’ve waited for, and how many times I’ve had to explain my condition to people who had never met me. Somewhere, one day, someone may open a file with my name on it. They’ll read words like progressive, rare and chronic. They’ll see reports, costs, policies and clinical information.
But they won’t see me.
They won’t know that my favourite conversations are the ones that last so long the coffee goes cold. They won’t know that my dad can still make me laugh when I need it most, or that my boyfriend somehow knows exactly when I’m pretending to be okay. They won’t know how fiercely my family fights beside me, or how desperately I want to leave this world better than I found it.
And that makes me wonder…
Can any of us truly decide the value of a life we’ve never taken the time to know?
Can we measure hope on a spreadsheet?
Can we place a price tag on time?
If the person sitting opposite you was your daughter, your son, your partner or your best friend, and there was an opportunity—not for a miracle, not for a cure, but simply for the possibility of preserving more of the life they already had—would you stop fighting because it was expensive?
Or would you do everything in your power to give them that chance?
Every morning I wake up with hope. Not because I know what tomorrow will bring, but because I still believe tomorrow matters. I still have dreams that haven’t been realised. I still have work I want to do. I still have people I want to love, places I want to see and memories I want to make.
I’m not asking for perfection.
I’m not asking for pity.
And I’m certainly not asking for a miracle.
I’m asking for the chance to keep becoming the person I’m still fighting to be.
Perhaps this letter won’t change anything.
Perhaps you’ll finish reading it and simply move on with your day.
But maybe, just maybe, the next time you’re asked to make a decision about someone’s future, you’ll pause for a moment before you see only a diagnosis, a policy or a cost. Maybe you’ll remember that behind every application is a human being whose life is already full of love, purpose, dreams and people who would do anything to have them for a little longer.
Because before I was ever a patient, I was simply a person who wanted the same thing most of us want—a little more time with the people I love.
So before you decide what that time is worth, I have just one question for you.
If you were slowly losing pieces of your own life, and there was a chance to hold on to a little more of it… wouldn’t you fight for it too?
