Theo's story - Epilepsy Queensland - share your story

Theo's Story

Joanna’s son Theo, was diagnosed with epilepsy after what appeared to be a straightforward pregnancy and birth. Her world changed five hours after Theo’s birth when he stopped breathing and started having multiple seizures.

Helpline proves to be a lifeline

“Newborn life is busy at the best of times, and I was navigating how to be both a mother for the first time and a mother to a baby with epilepsy. It wasn’t until the dust began to settle that I realised I was struggling with the emotional toll epilepsy can take, particularly without knowing anyone else affected either directly or indirectly,” Joanna said.

Joanna rang the Epilepsy Helpline for support.

She shares: “When I rang Epilepsy Queensland they told me about opportunities to connect with other people and family members of people with epilepsy. I immediately discovered a wide range of valuable information as well as fundraisers and other fun events to attend, but most of all, I found a huge sense of compassion and support from the others in the same boat. I realised that I am not alone. I felt so supported and understood and the fact that there is a community that knows what I have gone through means a lot for me.”

A happy update as Theo becomes seizure free

“Today we celebrate 3 MONTHS since we began tapering off my beautiful son’s epilepsy medication.

We are lucky to say we have fostered a special relationship with a wonderful foundation that has kept us strong through the ups and downs. Epilepsy Queensland armed us with the tools, education, and courage I needed to support my son in his superhuman strength (he is far stronger than I’ll ever be!)

As a first time mum AND first time having any contact with epilepsy, it’s safe to say we were thrown in the deep end. Epilepsy Queensland has been the life ring that has kept us afloat.

Theo is now medication free, but no matter the outcome, we will always support Epilepsy QLD in the same way they have supported us.

Theo has been seizure-free since the beginning of the year and has been medication-free for the last three months, despite doctors predicting Theo would be taking both Topamax and Keppra well into his primary school years,” Joanna said.

Hope for the future

Joanna shares: “A potential outcome of his diagnosis (myoclonic seizures due to birth trauma) was the risk of developmental delay, however, he has been reaching all his milestones and shown there’s simply no stopping him!

Theo will be two in February and is very typical for his age- feisty, cheeky, and full of love! His favourite food is avocado and he loves to play with his two labradors. With our new milestone achieved, we are looking forward to integrating Theo into a full-time daycare next year, worry-free!”

We are thrilled for you both, Joanna and are so glad we were able to be there for you and Theo when you needed it.


Epilepsy Queensland