"This fundraiser has been set up by Sarah and Jason for Sonny, with this story written by their dear friend Kim, who couldn't sit by and watch them carry this alone."

My name is Kim, and I'm writing this on behalf of two of the most beautiful humans I know my dear friends Sarah and Jason and their precious little boy, Sonny.

Anyone who knows Sarah knows she has spent her whole life showing up for others. Through her styling work, her faith, her charity, and the love she pours into everyone around her. She would never ask for help for herself.

So I'm asking on her behalf, because right now, this family needs us.

I know how much guilt Sarah and Jason have been carrying about even opening this fundraiser. After so many kind messages from their community asking how to help, I gently pushed them to let that love come back to them.

For their little boy.

This is Sonny.

He is two years old. He is funny, brave, and so deeply loved. He lights up a room without trying. He is the most precious gift Sarah and Jason have ever been given.

He loves the moon and the colour orange. He loves their cat Connie and their dog Bubbelo Bill.

Their world changed earlier this year.

In February, Sonny started having seizures. They were strong, frequent, and terrifying. Sarah and Jason called ambulances more times than they can count. He was diagnosed with epilepsy, medicated, and the seizures stopped (for a time) and they exhaled.

Then, slowly, other things started happening.

His speech wasn't coming. He wasn't learning new words. He was losing them. His little body began to fail him. He stumbled, tripped, and fell. One morning he woke up crying and couldn't move.

They knew in their gut that something more was happening. They just didn't know what.

The day everything shifted.

After months of waiting for scans, results, and specialist appointments, the family ended up in the emergency department of the Queensland Children's Hospital.

That day changed their lives forever.

Sonny's brain scans showed what no parent ever wants to see. And after further genetic testing, on May 19th, Sonny was officially diagnosed with CLN2 Batten disease — a rare, progressive, degenerative genetic condition.

CLN2 is one of the rarest childhood neurological diseases in the world. Sonny's body cannot produce enough of an enzyme called TPP1, which means waste slowly builds up in his brain cells over time. The condition is progressive. There is currently no cure.

Both Sarah and Jason unknowingly carry the gene. The chance of two carriers meeting, and then passing it on, is heartbreaking. Their whole situation is rare but Sonny is, and always will be, their miracle.

They have been told that, over time, Sonny is expected to lose his ability to walk, to eat, to speak, and will go blind, alongside ongoing seizures and cognitive decline.

But Sarah and Jason refuse to accept that this is the end of Sonny's story. And neither do I.

Where they are now.

For months, Sarah and Jason grieved silently behind closed doors. They kept quiet with friends and family because they didn't want to be a burden, and because they wanted to keep praying for the best-case scenario.

But the truth is, they are struggling. There's a name for it... anticipatory grief. The grief of losing someone who is still here. They are both getting professional support to help them through this season, and I am so grateful they sought it.

Every day, something new happens with Sonny.

Some mornings Sarah wakes up afraid he won't wake up.

They've recently bought him protective headgear, because he can no longer hold himself up long enough without falling and injuring himself. They've shared a photo, because honestly he looks handsome and strong in it.

His seizures are returning. He is losing weight. He has days where they think he is doing amazing and then a new day comes and he can't hold a spoon. He tremors when he reaches for his favourite toy. He falls because the connection from his brain to his body isn't firing the way it used to. And the seizures. The seizures are just simply awful.

They are being guided by wonderful specialists in Brisbane, and they trust them completely. But this road is devastating, and every day is both precious and terrifying.

They are doing everything they can to hold him, love him, and give him the most beautiful life possible, no matter what comes.

There is hope.

There is one treatment available that can help slow the progression of CLN2. It is not a cure, but it can give Sonny more time, more words, more steps, more life. Sarah and Jason are working closely with Sonny's neurology and genetics teams to begin that journey, and they are also exploring research and clinical trials around the world.

The road ahead is hard, and the treatment itself is significant. But this family will do whatever it takes to give Sonny every possible day.

Why I'm asking on their behalf.

Honestly, they didn't want to ask. Sarah and Jason have always worked hard to take care of their family on their own.

But since they shared Sonny's story, their community has shown up in a way none of us could have imagined. So many of you have asked how you can help and the truth is, no one yet knows everything the road ahead will hold, or everything Sonny will need.

So I'm humbly opening this fundraiser on their behalf, trusting that whatever comes from it will help give Sonny the best possible life and the best possible chance.

How your donation will help:

All funds are held in a dedicated account set up for Sonny, managed by Sarah and Jason as his parents, solely for his care, medical needs, and research. Every dollar goes to Sonny.

To anyone who can help:

If you are a specialist, researcher, clinician, or a family who has walked a similar path please reach out to Sarah and Jason. They are open to every door.

If you can spare even just $1, your donation moves them one step closer to the answers and hope Sonny deserves.

If all you have is a prayer, a share, or a kind thought please send those too. They feel every single one of them.

Thank you, from all of us.

To everyone who has held this family through this: you have no idea what your love has meant. You are part of Sonny's story now too.

We will keep sharing updates here as Sarah, Jason, and Sonny navigate this journey. They will keep fighting. They will keep believing. And we will keep walking alongside them.

With so much love,

Kim

On behalf of Sarah, Jason & Sonny

Courier mail Interview

B105 Interview

‘No cure’ News.com.au

'Inexplicable Seizures' People Magazine

'Terminal diagnosis' Nine.com.au