Story featured in the Sunday Herald Sun.

Words: Alanah Frost

Photography: Alex Coppel

When little Sarah Miguelez Gallardo is up and going, there’s no stopping her. The 22-month-old toddler is inquisitive. She climbs, she runs and she smiles all the way — despite the bandage wrapped around her little head. 

Just shy of her first birthday, Sarah began having seizures, which the family now knows to be infantile spasms. “I could see that she was doing something funny – every now and then her head would come down and her arms were up,” mum Anay Gallardo said.

“The next time she did it I filmed her … and we drove down to The Royal Children’s Hospital (RCH).

“They forwarded the video to their neurology team and within a few hours we were in a room. It all got a bit scary
and overwhelming.”

Now almost a year later, and after trialling different drugs, doctors still haven’t completely got to the bottom of Sarah’s condition.

Last week she was placed under observation for 24 hours, confined to her bed and a square patch of floor barely big enough to stretch her little legs, while she underwent an EEG scan. A surveillance camera was placed on the ceiling to capture any unusual movements. On her back, a miniature backpack filled with cords and wires and monitors mapped her brain activity to find out why her tiny body sometimes convulses in fits. But looking at Sarah, you would barely know she is fighting an internal battle. Her energy is contagious and her smile infectious.

“Because their brains are still developing at this age, no one really knows how things are going to pan out,” Ms Gallardo said.

“It’s (about) making sure we keep the seizures under control and doing all the tests to make sure things aren’t getting any worse.

“Its been a bit of an adventure. You cherish each little step that she takes.”