TRAVELLING between Naracoorte and Melbourne is the new normal for the Collins family after son Max was diagnosed with epilepsy at just five years of age.
Max’s parents Mark and Lydia Collins recall their son staring blankly and not being as responsive as other children his age.
His teacher noticed similar symptoms soon after starting school and recommended the family take him to a doctor.
Although Max was not having the “usual” tonic clonic seizures people instantly recognise as epilepsy, the blank stares and unresponsive behaviour were in-fact seizure activity.
Max was eventually diagnosed with epilepsy after multiple visits to different doctors, specialists and paediatricians.
Ms Collins said the start of Max’s journey was more “full on” than anticipated.
“To start with Max was having MRIs and EEGs (electroencephalogram) which was a lot to take in,” he said.
“You never want to see your child hooked up to these machines and not knowing what is going on, especially at such a young age.”
Now six years on, 11-year-old Max and his family are still searching for the right treatment, while his condition has worsened.
Max had his first tonic clonic seizure at the start of this year, an experience Mr Collins will never forget.
“Those first few times it happened were terrifying,” he said.
Mr Collins said tonic clonic seizures are now an unfortunate reality for the family.
“It is not great that things have developed like this for Max, but we do the best we can to deal with it,” he said.
“When it started happening his little sister, Poppy, would be terrified for her brother, but now she is getting used to it.
“She goes and gets him a pillow and knows to keep Willow, our youngest daughter, away to make sure Max is okay.”
Although the family has had more than its fair share of hardship, Mr Collins remains hopeful for the future.
“It is tough when you meet families or see kids that get diagnosed with epilepsy but manage to find a medication that works for them almost instantly,” he said.
“Although we have not reached that point with Max yet, we are doing everything in our power to make sure we get there.
“Sometimes it gets hard and you think about how unfair it is but you just have to remember who you are fighting for.
“Our children are our world and we would do absolutely anything to ensure their happiness and health.”
The Collins family made headlines earlier this month after a hotel cancelled the family’s stay due to Max’s epilepsy.
In the lead up to their stay, Mr Collins emailed the facility to let them know about Max’s condition – as they always do in case of any emergency situations – but promptly received a reply stating their accommodation had been cancelled.
“It was really heart breaking for them to feel the need to cancel our stay because of Max’s condition,” Mr Collins said.
“We were not telling them to get anything out of it, just to say ‘hey, Max has epilepsy, we have to do things a little differently than most families’.
“Luckily we were able to find different accommodation and our weekend was not lost, but the initial booking was just ridiculous.
However, Mr Collins is using the incident to shed light on epilepsy.
“With our story being shared now, it has gained more recognition for epilepsy and hopefully starts more conversation about how to combat the disease.
“The more awareness the better.
“Hopefully we can get more people to donate towards epilepsy and we can one day find a cure for Max.”
