Makayla's Story

At just five years of age Makayla suddenly suffered a fit that lasted 54 minutes. She was rushed to hospital by ambulance. She was in Sydney Children's Hospital, Randwick, for one week and underwent tests that monitored her brain activity to understand the severity of her condition.

While in hospital she was diagnosed with Epilepsy. Family and friends had commented on the dark circles under her eyes and how tired she looked the day before her first fit – the only sign her body gave of the impending seizure.

Makayla was able to go home after seven days but continued to have seizures on a regular basis, each usually lasting around 30 seconds. Luckily, she tended to have fits in the early morning while still in bed, so she had less chance of injuring herself during an uncontrollable seizure. Makayla would have just enough time to call out to her mum, Renee, before the seizure took control of her body.

"Each morning I'd wake up and tip toe around the house, not wanting to turn on the radio or TV, so I could listen for Makayla’s call," says Renee. “I would come running to find Makayla’s arm, leg or face in spasms, but all I could do was comfort her and wait for the fit to end.”

The team of doctors in the Hospital prescribed medication to manage her epilepsy, which has helped reduce her fits except on one occasion when she started fitting again for no apparent reason.

Makalya is now nine years old and has not had a fit for 18 months. Makayla and Renee can only hope that Makayla stays seizure free for at least two years, after which she may be able to be weaned off the medication.

Renee says their family has learned to live with Makalya’s epilepsy. “As a credit to the hardworking staff at the Hospital, I've never walked out of Hospital feeling uncertain or unsure. When we ask, our questions are answered and the staff are so helpful with Makayla. The staff do everything they can to explain Makayla's epilepsy to us, even though there are still many unknowns surrounding the condition,” she says.

"I started out thinking why us, why Makayla, but since spending time at the Hospital, we can see there are lots of sick children and we're actually quite lucky that we get to go home after our appointments. One of the hardest things is that Makayla may have to live with this for the rest of her life. Despite that, Makayla is such a happy and brave girl. She loves singing and dancing for her Doctors and nurses and is growing up to be quite the little entertainer!” says Renee.