Amelia's Story - Epilepsy Queensland

Amelia's Story

As told by her mum, Desiree.

Amelia had her first absence seizure when she was around five months old. She has absence, myoclonic and tonic clonic seizures, however she is now starting to experience more types including atonic, tonic and focal seizures.

We have a strong family history of epilepsy; my mother, Amelia’s grandmother, had epilepsy and passed away from it in 2000. Also her uncle as a child had epilepsy but grew out of it. For myself it was heartbreaking to see Amelia have epilepsy and we still get very upset when she has seizures.

Most of the doctors in Amelia’s care believed she had epilepsy, however we didn’t receive a full diagnosis until late last year.

Now Amelia is four years old, and the biggest challenge is being delayed with starting school. It has also been difficult watching paramedics explain what will happen if they place her in a coma, or in the resus room. Lately her seizures have been in her sleep, so this is terrifying for us as well as her siblings.

It has been good knowing that we have helped educate others about epilepsy, that’s it’s not just one seizure and that they can progress – it is just something we are dealing with now. We’ve become a little community who can rally behind her and us as a family.

My advice for others impacted by epilepsy is to 1,000% follow your gut. If you’ve been newly diagnosed, do research – we’re so lucky to have the social platforms today that always have updated information and to join groups.

We are a community, we stick together. It is a scary ride but it’s also a very eye opening one.

Epilepsy Queensland