Longford Little Blue Hero Tobias Godla: Tobias still has got the biggest smile

In some ways, Tobias Godla is like many four-year-old boys. He loves Spiderman, specifically the animated Spider-Verse films with Miles Morales, and watches them as much as he can.

“He watches them 100 times a day,” his dad Roman says with a laugh.

But Tobias has been diagnosed with an incredibly rare condition known as Batten disease, the only child in Ireland at present.

Specifically, Tobias suffers from the CLN2 variation of the disease, a rare and rapidly-progressing paediatric brain disorder.

Children with this disease suffer from a shortage of the enzyme TPP1 (tripeptidyl peptidase 1), which is responsible for clearing out the waste that naturally builds up in the body's cells.

Without this enzyme, waste continues to accumulate and ultimately causes damage to the cells, particularly in the brain and retinas. This damage has a massive effect on motor, cognitive and visual functions.

“It’s a life-limiting disease,” Roman says. “Kids usually don't survive eight or 12 years of age.”

Before the effects of the disease took hold, Tobias was like any little boy.

“He used to play football all the time,” Roman recalls.

“When people saw him they came to me saying he has really big talent but now he can’t really kick a ball without falling, it’s heartbreaking.”

“I still have videos on my phone of him running non-stop in the park or playing football but I don’t really watch it as it breaks my heart,” he says.

Tobias suffers now from poor coordination and balance, known as ataxia.

“He’s falling a lot, so we have to be with him all the time even if he’s playing,” Roman says.

“He also has a tremor so we have to feed him and also he’s epileptic - he takes several medications for such a little child.”

There is no cure for Batten CLN2, only life-prolonging treatment. Tobias has to travel regularly from Longford, to Temple Street Hospital in Dublin for enzyme replacement therapy.

Roman is also hopeful that a new gene therapy treatment will provide better relief for Tobias’ condition, and possibly even a cure.

It was thanks to a social worker in Temple Street that he was introduced to Little Blue Heroes.

As a Little Blue Hero, Tobias is now an honorary garda, and the organisation pairs him with a member of An Garda Síochana.

He and his family - mam Lenka and big brother Roman Jnr - are very excited, according to Roman Snr, about his starring role in the new Little Blue Heroes book, which sees Tobias and six of his fellow heroes work together with the Garda Dog Unit to save Christmas.

Despite such obstacles so young, Tobias is still a very happy child, Roman says.

“He still has the biggest smile, we as parents make sure he is happy.”

Caption: Honorary Garda Tobias Godla gets the thumbs up from his family