Layla's Story

Layla, a one-year-old bub, was diagnosed with refractory infantile epilepsy at three months and infantile spasms at five months. Here her mum sits down with us and talks about their journey and what they wish they could tell other parents.

Tell me about Layla and her experiences

At first, we noticed that something was wrong when Layla kept doing abdominal crunching movements. We took her to the hospital, and she had a clear EEG, so we went home. A few weeks later she was having seizures multiple times a day. We took her to Starship after we weren't happy with doctors telling us she was fine, and we were given the diagnosis. She's now 12 months old, she has more seizure types and because her epilepsy is drug-resistant, she's still battling spasms, a catastrophic type of epilepsy.

What has been the scariest moment so far?

The scariest moment was watching her have a seizure for so long that emergency medicine had to be given in the hospital. She started to choke on the medicine, and she couldn't breathe. The seizure stopped and she recovered after a little suction. It was terrifying.

How has it been when nurses have been coming to your house?

It's been pretty easy communicating with the team that look after her. We've had a couple of zoom calls, phone calls and monthly visits with the nurse. It's easy to share our concerns.

What has been the best part of the care you have received?

There are so many positives about the care Layla has received. I think the highlight for us is how amazing and informative the neurologist has been through this journey. She's always positive and willing to try new treatment options. She never gives up and that really helps with our mindset as parents.

Tell us a bit about her progress

Layla has physiotherapy once a month, conductive education classes twice a week and speech and language therapy. She does have delayed development, but she's working on improving her gross and fine motor skills. She loves to babble, she's learning to play with toys, and she loves to laugh and smile.

What has this whole journey taught you?

The whole journey has taught us how many people live with epilepsy, and how it can impact people and their lives. It's given us a greater appreciation for those who work in the medical field. It's also taught us what's important to us in life — basically just family, happiness and health.

What is something you wish you could say to other parents going through something similar?

We would encourage other parents to keep going and tell them they're doing a great job! We are part of many support groups for parents with kids who have epilepsy and Infantile Spasms and it's been incredibly helpful. There's a short little reading called 'Welcome to Holland' online and it's nice for special needs parents to read on a bad day.

Ngā mihi nui.