17/06/2026
Our new reality. 🧡
If you had told us a few months ago that this would be our life, I don’t think we would have believed you.
Sonny has Batten disease. A very rare, terminal disease that slowly takes away a child’s ability to see, move, talk and think. Eventually, it takes their life.
Even writing those words still feels surreal.
Since finding out, it feels like we’ve been dropped into a world we never knew existed. One filled with hospital appointments, treatments, medical terms and a future that suddenly feels so uncertain.
But through all of it, we’ve realised something.
This is our reality, but it’s also Sonny’s childhood.
He doesn’t wake up thinking about diagnoses, statistics or what the future might hold. He’s two. He wants to play, laugh, explore, be cheeky, cuddle us, read books for the hundredth time and sing the same songs over and over again.
So we’re trying our best to see the world through his eyes.
If hospitals are going to be a part of his life, then we’ll bring the toys. We’ll sing the songs. We’ll make friends with the nurses. We’ll celebrate the little wins. We’ll find joy where we can.
Because while this disease has taken so much from our future, we refuse to let it steal the beautiful moments we still have right now.
The truth is, fear and sadness walk beside us every single day. That’s the reality of loving a child with a terminal illness.
But so does love.
So does hope.
So does kindness.
And somehow, those things keep carrying us forward.
The nurses, doctors and hospital staff who care for Sonny are nothing short of incredible. What once felt terrifying is slowly becoming familiar, and many of them already feel like family.
Thank you for following our journey. Thank you for helping us spread awareness about Batten disease. Thank you for holding space for our grief while also celebrating our little boy alongside us.
We never want this page to only be about sadness.
We want it to be about Sonny.
His smile. His personality. His childhood. The memories we’re making. The people we’re meeting. The hope we’re holding onto. And as long as Sonny keeps finding reasons to smile, so will we. 🧡
