Over the years, I’ve been asked many questions about living with Spinal Muscular Atrophy. People often want to know how I stay positive, where my resilience comes from, and what keeps me going when life becomes difficult.
Recently, someone asked me where my fight and strength come from.
I didn’t even have to think about my answer. My family.
Choosing to Fight
I was diagnosed with SMA when I was just one year old.
Of course, I was far too young to understand what was happening. It was only years later, when I began asking questions, that my parents shared more about those early days. They spoke about the difficult journey to diagnosis and how little information they were given. There was no clear roadmap, no guarantees, and very few answers.
In many ways, they were forced to take each day as it came. And somewhere in that uncertainty, they made a choice.
They chose to fight.
Not because they knew what the future held, but because they believed that hope was worth holding onto. More than twenty years later, that same spirit still defines our family.
Family Is What You Make It
When I think about family, I think of far more than just blood relations.
I think of my parents and siblings. Their partners. My nieces and nephews. My extended family. My boyfriend. My closest friends. The people who have walked this journey with me and loved me through every season.
Because I’ve learned that family isn’t simply who you’re related to.
Family is what you make it. Family is the people who show up. The people who stay. The people who choose you, over and over again.
Never Fighting Alone
One of the greatest gifts I have been given is that I have never had to face this journey alone.
I’ve never spent time in hospital without someone by my side. When I was younger, everyone took shifts so that there was always a familiar face in the room.
Whenever new research or developments around SMA emerge, someone in my family has already sent me an article or message about it. Everyone has become an advocate in their own way. Everyone helps explain what we are going through. Everyone encourages others to get involved.
Whether it has been driving me somewhere, helping me when I need support, fundraising through the Kerry Walsh Trust, or cheering me on in my speaking career, they have always shown up.
Perhaps one of the greatest gifts my family gave me was refusing to treat me as fragile.
I was never encouraged to live a small life. I was encouraged to be independent. To chase opportunities. To dream big. To try. To fail. To laugh. To live.
The Moments When I Needed Them to Fight a Little More
Like anyone living with a progressive condition, there have been seasons when I simply didn’t have the energy.
Moments when the emotional weight felt heavy. Moments when I needed the people around me to carry hope for me.
But I have never given up. I have never expected others to fight my battles for me. Instead, I have been blessed with people who have stood beside me and said, “We’ll walk through this together.”
Sometimes strength doesn’t mean carrying everything yourself. Sometimes strength means allowing others to help carry you for a while.
What They Taught Me
If I look back on everything my family has taught me, a few lessons stand out.
Always keep your sense of humour. Have faith that somehow things will work themselves out. Never accept “no” as the final answer.
And perhaps most importantly…
Never forget that you are not alone. These lessons have shaped not only the person I am, but also the woman I continue to become.
The People We Don’t Always See
When someone lives with a rare disease, people naturally focus on the individual with the diagnosis.
And rightly so. But I don’t think we always stop to consider the people standing around them. The parents who lie awake at night worrying. The siblings who quietly become advocates. The partners who adapt and support. The grandparents, aunts, uncles and friends who love deeply and carry the emotional weight alongside them.
Rare diseases don’t just affect one person. They affect entire families. They can be emotionally exhausting. Sometimes physically exhausting. And yet, despite all of that, families continue to love, to hope and to fight.
People often see the person living with the rare disease. But they don’t always see the army standing behind them.
The Strength Behind My Strength
As I wrote in my previous blog, The Fear of Becoming a Burden, one of my greatest fears has been becoming too much for the people I love.
But perhaps I have spent too much time looking at what I need from them, and not enough time appreciating what they have freely chosen to give.
Love.
Time.
Energy.
Support.
Hope.
For more than twenty years. Looking back, I am overwhelmed with gratitude. Not only because I have made it this far, but because I have been given the opportunity to share my story and create awareness for others living with rare diseases.
People sometimes tell me that I’m strong. And while I appreciate that, I know the truth. My strength has never belonged only to me. It has been built by the people who chose to fight long before I was old enough to understand what we were fighting for.
And after all these years, we’re still fighting. Together. Because no one was ever meant to do this alone.
Where does your strength come from?
I’d love to hear about the people, experiences, or beliefs that help you keep going when life gets hard. Because sometimes, the greatest strength we have is found in the people standing beside us.
Strength doesn’t always come from within. Sometimes, it comes from the people who choose to fight alongside us. ❤️
