Jaxson’s Story

Our journey started just over a month ago.

I woke up one Sunday morning to find my 11-month-old baby boy hunched over to his right side, unable to move his left leg and crying in pain. We rushed him to the emergency department, where tests were done but gave us no answers. Within 24 hours, we were transferred to John Hunter Children’s Hospital for more specialised care.

Over the next few days, they ran more tests until finally, on Wednesday, they decided to perform an MRI. Because Jaxson is so little, they had to put him under general anaesthetic. About an hour after the scan, five doctors and the head of oncology came to speak with us privately.

That’s when our world stopped. They told us Jaxson had a 10 cm tumour on his spine — the reason he’d lost the use of his left leg and his body was twisting to one side. They said that if they didn’t operate within days, he would be paralysed.

We signed the consent forms immediately. That Friday, he went in for a 10-hour spinal cord surgery. The thought of that was unbearable, but we had no choice.

When the surgeon called that evening to say the operation had gone well, we broke down in relief. Jaxson had movement in both legs when stimulated, and we thought maybe the worst was behind us.

The next few days were rough. They had to cut through seven vertebrae, leaving an incision that stretched from the middle of his shoulders to his waistline. He was on strict flat-bed rest. But the surgeons did an incredible job — they removed about 75 % of the tumour while preserving neurological function. The rest was too deeply intertwined with his spinal nerves to ever remove.

By the fourth and fifth day, things were looking brighter. He started regaining spontaneous movement, and we could finally hold him again.

But then things began to change. His left-leg movement slowly decreased, and his posture started bending to the right again. We raised our concerns with the doctors every day, but they assured us it was likely post-surgical swelling. Around that time, he also caught a rhinovirus, stopped eating, and grew weaker.

Even with these signs, there was talk of sending us home — but we refused. He wasn’t eating properly, hadn’t used his bowels, and his movement was clearly worsening.

After ten long days, we finally convinced them to do another MRI — which happened to fall on his first birthday.

Halfway through the small hospital-garden birthday party we’d planned for him and his older brother, we were told to come immediately for his scan. We sat outside recovery waiting to see him when a doctor approached and asked if the neurosurgery team had spoken to us yet. We said no. That’s when she told us the news that shattered us completely: the tumour had regrown, larger than before — in just two weeks.

The next day — Lincolns fifth birthday — they took Jaxson back in for another major surgery.

That night was one of the hardest of our lives. But once again, our little boy came out of it strong. The surgeons believe they removed more of the tumour this time, and miraculously, he still had movement in both legs.

Five days after that second surgery, he began his first round of chemotherapy. He’s been coping well so far, but it’s still early days. He’s regained a lot of movement in his left leg, but there is no way of knowing if he will recover fully we’re holding on to hope that with time and therapy, he’ll regain even more — maybe enough to walk .

We’ve been living in the hospital for a month now. I’ve only slept at home three nights since this all began. My wife and I stopped working overnight to be by his side, but our family and friends have been incredible — helping with our older kids and supporting us through the darkest time of our lives

Unfortunatly sick and holiday pay is running thin and tay went back to casual after jaxsons suprise birth 12 months ago and christmas fast approaching things are looking grim financially .

Through it all, Jaxson has shown unbelievable strength and courage. He smiles through the pain, fights every day, and keeps proving everyone wrong.

We call him Super Jax — our little superhero.

He’s fighting like no baby should ever have to, but he’s showing the world what true strength looks like.