Our story

Grayson is our second beautiful boy our little miracle who came into our lives after three miscarriages. To make his arrival even more special, he was born on mine and my twin sister’s birthday. From the moment he arrived, we were completely smitten.

From the beginning, Grayson was full of life. He was our adventurous, fearless little daredevil who loved climbing, running, jumping and getting into absolutely everything. He walked before his first birthday and began talking and developing just as we expected. He was happy, cheeky, curious and always on the go.

At around two and a half, I started noticing changes in his speech. Words he once used began disappearing, and instead of his communication progressing, it seemed to be going backwards. At the time, I wondered whether he may have autism, so we spoke to our doctor about accessing speech therapy and further support.

Then, just after his third birthday, everything changed.

Grayson experienced his first seizure while at childcare and was rushed to hospital. After being monitored, we were sent home and told it may have been a febrile seizure. But two weeks later, he had another seizure. Then another. For the next few months, it felt like we were caught in a constant cycle of seizures, hospital visits and searching desperately for answers.

Eventually, we were able to see a neurologist and Grayson was booked in for an EEG, which showed abnormal activity in his brain. We were initially told he had generalised epilepsy.

I remember feeling devastated at the time and worrying about what epilepsy might mean for his future even things as simple as whether he would ever be able to drive.

Looking back now, those worries feel so small compared with what was still to come.

Grayson was started on anti-seizure medication, but his seizures were resistant to treatment. I also couldn’t shake the feeling that there was something more going on, particularly because of the regression we had already noticed in his speech.

That eventually led us to genetic testing.

A few months later, when the results finally came back, we received a call asking us to come in and meet with Grayson’s neurology team.

I remember walking into that room with Dylan and Grayson and immediately feeling that something wasn’t right. Our doctor was there, his neurologist was there, and there was also a genetic counsellor. I remember looking around the room and thinking, Why is everyone here?

That was the moment the worry really set in.

What happened next is something I don’t think I will ever forget.

I can still hear the words so clearly:

“I’m so sorry to tell you this, but your son has Batten disease, and there is currently no cure.”

I completely broke down.

I couldn’t stop holding and hugging Grayson, saying, “No, no, not my baby. How can this be happening? He is so perfect. There has to be a mistake.”

I couldn’t process anything else they were telling us. I couldn’t talk about treatments or what came next. I just needed to get out of that room. We had to come back another time to discuss his treatment options and what the plan would be moving forward.

The days that followed are still a blur. Dylan and I were completely numb. It felt like we were living someone else’s life, constantly wondering when we were going to wake up from this nightmare.

Nothing can prepare you for being told that your beautiful little boy has a rare, progressive disease. In that moment, the future we had imagined for Grayson and for our family changed forever.

But Grayson is so much more than his diagnosis.

He is still our beautiful, cheeky, adventurous boy. He is still the little miracle we waited so desperately for. Batten disease may have changed the path our family is walking, but it will never define who Grayson is or how deeply he is loved.

We are now doing everything we can to raise awareness of Batten disease and funds for the vital research needed to find better treatments and, one day, a cure. We hold onto every bit of hope that advances in research will bring a brighter future for Grayson and for every child and family facing this devastating disease.

Until that day, we are choosing to make every moment count.

We are soaking up the little things, creating beautiful memories and making the most of our time together as a family. We will continue to fight, advocate, raise awareness and hold onto hope — even on the days when hope feels incredibly hard.

Because Grayson deserves that.

Every child with Batten disease deserves that.

And until there is a cure, we will never stop fighting for one.