- When Caite Rolfe’s son Jasper started developing seizures due to epilepsy, she never imagined how drastically her life would change
- In the years that followed, both her youngest son Carter and husband David were diagnosed with epilepsy too
- Doctors have carried out new tests to see if David, Jasper and Carter’s epilepsy are related to a shared gene
Here Caite, 35, tells her own story in her own words.
Walking in to wake my bub, Jasper, then 16 months, my heart stopped. His eyes were stuck to the right and he couldn’t sit up.
What’s wrong?’ I panicked.
My hubby David, then 25, and I took him to hospital where doctors found Jasper had suffered a brain stem stroke.
‘We don’t know the cause, but he seems to be recovering,’ they assured us.
But a week later, at home, Jasper started having seizures. Our boy would blankly stare into the distance and chew his lip.
Back at hospital, an electroencephalogram (EEG) revealed abnormal spikes in his brain, but couldn’t detect what was going on.
Over the next few months, Jasper had multiple tests as the seizures kept coming.
‘Could it be epilepsy?’ I asked the doctor.
‘We’ll put him on meds and see if it makes a difference,’ he replied.
Incredibly, the seizures dramatically reduced.
He was officially diagnosed in October 2013, and we got back to family life.
In November 2014, we had a second boy, Carter.
Doctors had run genetic tests on Jasper to see if Carter might also have epilepsy, but all came back fine.
But at four months old, Carter started experiencing what looked like seizures every two to three weeks.
These are febrile convulsions,’ the doctor explained. ‘They’re common in babies who can’t yet control their temperature properly and he’ll grow out of it.’
And by age four, the convulsions had stopped.
Over the next few years, David and I focused on raising the boys, who both had developmental delays and were diagnosed with autism.
Best buddies, they loved playing together.
READ MORE: My bub was born with a tumour
Then, one day in January 2021, David suffered a huge seizure and collapsed at work.
He’d often felt out-of-body experiences but never knew they were mild seizures.
Doctors diagnosed him with epilepsy and put him on medication too.
In October 2022, I noticed occasions where Carter would look vacant and not respond to me, just like Jasper.
Doctors put it down to his autism and ADHD. But by March the following year, Carter started having up to six seizures a day.
Convinced it was epilepsy, I got a second opinion. He was prescribed medication which deceased the seizures.
‘Finally,’ I sighed, relieved.
READ MORE: Music helped me heal: A stroke left me unable to speak
As Jasper’s genetic testing happened so long ago, doctors carried out new tests to see if David, Jasper and Carter’s epilepsy are related to a shared gene.
Carter’s has come back positive, so now we’re just waiting on the other two.
‘It would explain their developmental delays and the seizures,’ the doctor explained.
We hope to find out the results in the next month.
Despite everything they’ve gone through, Jasper, now 12, and Carter, nine, are cheeky, happy boys who are full of energy and love playing together.
It’s been a hard journey but we couldn’t have done it without Epilepsy Queensland, who have supported us all as we navigated the challenges.
I’m just so proud of my brave boys.
March is ‘Make March Purple For Epilepsy’ month .
Visit makemarchpurple.org.au
Can epilepsy be genetic?
Genetics is a leading cause of epilepsy – about 70% of cases have a genetic link
Researchers have found 76 genes connected to epilepsy so far
Different genes cause different types and severities of seizures
Some genetic epilepsies are rare and severe, starting in early childhood
These severe forms (called DEE) can be resistant to anti-seizure medications
Children with DEE may face developmental delays and other health challenges
