Imagine 50-60 seizures a day? One family's battle with childhood epilepsy

Family: Mark and Lydia Collins at home with their children Max, Willow and Poppy.
Family: Mark and Lydia Collins at home with their children Max, Willow and Poppy.

Life for Max Collins is not like other 11-year-old boys.

Living in Naracoorte with his parents Mark and Lydia and younger sisters Poppy and Willow, Max fights a daily, in fact hourly, battle with childhood epilepsy.

He can't go for a walk by himself because he's under round-the-clock supervision. Eating meals, going to the toilet or even brushing his teeth results in a mess for his parents to clean up. He has an estimated 50 or 60 seizures a day. He has seizures that wake him up all through the night.

An ambulance has been called for him 9-10 times since January.

As Lydia says: "It's not a life for a 12-year-old boy. The kid's just exhausted, all day every day."

The family made national headlines this month when their accommodation reservation for one of Max's medical visits to Melbourne was cancelled because of his epilepsy and the perceived risk it posed to the host. Social media blew up with comments of support for the family.

Mark and Lydia said they took to social media with their complaint because they were tired and frustrated with misunderstandings and misconceptions about Max's epilepsy. It wasn't about gaining a benefit for themselves.

"The only thing I want free is for my son to be free of epilepsy," Lydia said.

The family has been dealing with Max's epilepsy for most of his life. He was first diagnosed at age 5, and there were clear signs before then that he had some challenges.

It started with "blank stares" where it appeared Max's mind was simply wandering, but then developmental and learning delays became evident, myoclonic seizures and then tonic seizures.

Max can't even brush his teeth in peace

Lydia

Today, at age 11 (turning 12 in October), Max can't effectively read or write and his speech is significantly impaired. He attends school full-time, where he is a popular and welcome class member, but he requires the full-time care of a school services officer from 9am to 3.30pm every day.

What troubles Mark and Lydia most is that despite being on a treadmill of specialist visits, medications, trials, diets, scans, and every traditional and non-traditional remedy they can find, they are no closer to finding an effective way to manage Max's condition, let alone a cure.

They are just about to try another avenue, booking an appointment with a Sydney neurologist who specialises in cannabis oil treatment. They are hopeful of a positive outcome but also remain realistic, as they have tried cannabis products already (they had an effect for a while, but Max also has pharmacoresistance, so the products are no longer effective).

I don't like to say it, but I do get a bit jealous of other 12-year-old boys who can just run around and do all the things that Max should be able to do

Lydia

The search for a solution is taking its toll on everyone, even Max who his parents say always has a positive attitude.

After a seizure incident in a Naracoorte hotel this month, Max needed to spend a night in hospital, and Mark said when he woke up in the morning, he was apologetic about it happening in public.

"I said 'You don't need to apologise, mate'. He asked why it kept happening, and I said 'It's genetic, you were born with it'. He said 'I wish I wasn't born'."

Negative moments like that are not common, but Lydia said at times it was hard to stay positive.

"I don't like to say it, but I do get a bit jealous of other 12-year-old boys who can just run around and do all the things that Max should be able to do," she said. "It's just taken for granted. Max can't even brush his teeth in peace."

Mark added: "I'd always thought I'd love to run around and play a game of footy or cricket with Max when he got older. That won't happen unless there's some sort of miracle."

The couple said Max's situation was financially challenging with the cost of medications and travel for specialist appointments, and put a lot of stress on the family unit. It meant their social lives were very limited because at least one of them needed to be with Max almost all of the time, but they had all learned to adapt.

"We don't really do a lot socially - we can't really expect people to look after the kids because Max might have a tonic," Lydia said.

Max Collins with Kangaroos AFL heroes Scott Thompson and Shaun Higgins.

Max Collins with Kangaroos AFL heroes Scott Thompson and Shaun Higgins.

"It does put a strain on the family dynamic," Mark added. "It scares the pants off Poppy when (a seizure) happens but she's getting used to it. She'll go and get him a pillow and make sure he's comfortable and that sort of thing."

And the pressures on mum and dad as a couple?

"I think we do pretty well," Lydia said. "If anything it's brought us closer together," Mark added. "We've had to team up; it's the only way we can do it."

They are both very thankful to the Naracoorte community for their support and understanding of their situation.

The couple said apart from finding a way to manage Max's condition, their greatest wish would be for more understanding and awareness about childhood epilepsy.

Mark said most people would be unaware there were multiple childhood epilepsy syndromes, producing different types of seizures. They include tonic, atonic, myoclonic, tonic clonic and atypical absences.

This week, the family was thrilled to meet some of Max's AFL heroes from the North Melbourne Football Club in a visit organised by family friend Kevin Marshall.