Erinn and Anthony Pages don’t know what their son Charlie’s future holds, but they do know they want to make a difference to the lives of everyone living with epilepsy.
The Canberra family has been pounding the pavement throughout September to raise awareness and funds for Epilepsy ACT and they are encouraging others to take part in the official Walk For Epilepsy during October.
Erinn said the COVID-19 restrictions provided the perfect opportunity for the family to get a head start on their fundraising, and to encourage other Canberrans to hit the city’s walking trails.
Charlie has recently turned two. His epilepsy was diagnosed when he was just 14 months old. He stopped breathing and turned blue while eating a toddler biscuit.
Erinn said time felt like it was playing in slow motion.
“I saw Charlie’s hand slide down the wall, his face turned blue and he stopped breathing,” she said.
Paramedics came and checked the little boy over, saying he was fine, but they suggested taking him to hospital where he was again given the all-clear in the ER.
“Less than two days later, Charlie appeared to ‘space out’ while I changed his nappy, and within hours, he lost consciousness again,” Erinn said.
“We immediately drove to hospital where Charlie went on to have three more seizures while waiting to see the doctor.”
After six days of tests, further seizures and multiple medications, Charlie was diagnosed with focal seizures.
The diagnosis came as a huge shock to the family.
“We experienced what no parent ever wants to see – their baby losing consciousness, over and over again, multiple times a day,” Erinn said.
Charlie continued to have seizures where he would lose consciousness and stop breathing.
Erinn says his little face would turn purple and blue, then he would come to after a few minutes, beads of sweat over his nose and head, but tired and wanting to sleep immediately.
Anthony says the family had little knowledge of epilepsy before Charlie’s diagnosis and they were left feeling very overwhelmed and anxious.
They left the hospital with nothing more than a script for medication and first aid instructions.
“That’s where Epilepsy ACT stepped in and gave us some guidance,” Anthony said.
“It was such a traumatic time for us and they provided us with a lot of resources and information about where to get help.”
Epilepsy ACT organises get-togethers for people with epilepsy and their families.
“Tapping into that community is very important because you have an opportunity to meet families that are going through a similar journey,” Anthony said.
“They have that mutual understanding and, with no paediatric neurologist in Canberra, they can provide advice and support about Sydney-based doctors who come here.
“In the absence of organisations like Epilepsy ACT, you don’t get to know this stuff.”
Erinn says, as well as coming to terms with Charlie’s condition, the couple has had to “train” their family and friends about what to do if their son has a seizure while in their care, and to educate them about the various types of epilepsy.
“Charlie’s seizures come from the temporal lobe and he doesn’t experience your typical shaking type seizures,” she said.
“He runs everywhere, so we have to be careful that he doesn’t hit his head or fall over. It’s very stressful.”
Charlie is currently four months seizure-free on his medication and, while no one knows what the future holds for him, whether it’s childhood epilepsy or lifelong, Erinn says only time will tell.
“In this time, we feel incredibly lucky to hold Charlie in our arms, witness his cheeky smiles and love him with everything we have,” she added.
Erinn has started volunteering with Epilepsy ACT, writing grant applications as a way to give back to the organisation that has helped their family so much.
She hopes successful grants will help raise awareness of epilepsy in workplaces, sporting and community groups.
In the meantime, the Pages family is well on its way to raising $1000 as part of Canberra’s Walk for Epilepsy and they encourage others to join in during the month of October.
Whether it’s touring the local neighbourhood in a COVID-safe way, heading out to Namadgi or Tidbinbilla, or gearing up for a cycle around Lake Burley Griffin, every kilometre counts.
Epilepsy ACT provides support, reassurance, advocacy, referral and information for people with epilepsy, and promotes understanding of epilepsy through education and increased community awareness.
Donate or join the Walk for Epilepsy to raise vital funds to support people through every stage of their epilepsy journey.