“We’re Here for You” – Jones’ Story
As the holiday season approaches, it is a time when many of us think about family, connection, and joy. But for families living with epilepsy, this time of year can also bring uncertainty and fear.
Recently, I met Meredith, mother of eight -year-old Jones, who shared their family’s journey with epilepsy and how it has changed their lives.
A Frightening Morning
The very first time seven-year-old Jones had a seizure was “scary”. He woke up about 5am and went straight to his parents in their bedroom. He didn’t know why, but he knew something felt wrong inside.
For his parents, Meredith and Alex, the experience was utterly terrifying. After climbing into bed and falling asleep between them, Jones woke up, apparently choking and then rolled over and started convulsing.
“It was such a shock. I thought he was dying. I’d never seen a seizure before,” said Meredith.
Overnight, life changed for Meredith and Alex. As parents of three young children, they suddenly had to grapple with the fact that their healthy, outgoing eldest son had a form of epilepsy called SeLECTS (Self Limited Epilepsy with Centrotemporal Spikes).
Meredith said, “Not knowing was just the most frightening thing in the world. I didn’t even know the right terminology – I didn’t even know it was called a tonic clonic seizure.”
In the months that followed, Jones’ seizures evolved and grew worse. He experienced different seizures, including absence seizures and focal seizures. In the aftermath, he would vomit and feel tired. All of Jones’ seizures have happened during his sleep, which made Jones anxious about being alone at night – and his parents, too. To this day, Meredith said she has not had a full night’s sleep. She lives in fear of SUDEP – Sudden Unexpected Death from Epilepsy.
“There is always a little piece of me wondering when the next seizure is coming.”
Something I’ve heard from other parents, as well as Meredith, is that it can be quite hard to talk to friends and family who don’t have experience of epilepsy. They are sympathetic, but as Meredith said, “They just don’t understand what we’re going through.”
Finding Support
Few know the impact of epilepsy on family life better than our dedicated team. For Meredith, Epilepsy Action Australia has been a lifeline. One day, when she was feeling “particularly down”, she got in touch. “I talked to one of the nurses – and I did break down in tears – but I felt so comforted and supported throughout the call. We are so grateful to have a place like Epilepsy Action Australia there to support us. The Epilepsy Action nurses are angels”
Together, we can make a difference
Families need us – and we need you. Your donation means we can keep our specialist epilepsy nurses on the phones, our training and education programs running, and our programs free for families who need them most.
Carol Ireland
