A mother is sharing the story of her daughter, Ariana, 2, who was diagnosed with epilepsy at four-months old.
Leah Sullivan, of Young, on NSW's South West Slopes, says she hopes this story resonates with other parents and families who have been through, or are going through, a similar journey.
Ariana's story told by mum, Leah
When Ariana was four months old, she had her first seizure. I heard her stirring ready for her midnight feed, but when I went to placed her against my breast, I got no response. I started to panic after rubbing her chest and calling her name and still not getting anything from her.
I woke my fiancé Josh, saying "something is wrong with Ari, she's not responding".
Two minutes later; snap. Her eyes popped open and she let out a huge wail. We took her straight to the hospital after a long night of blood tests, an EEG, monitoring, and a very happy baby, they let us go. All the tests had come back clear. It sounded like a seizure but doctors hoped it was a one-off event. We were relieved, our baby was fine.
But two nights later, we were back in the hospital. I was laying in bed next to Ari when she had her second seizure, lasting two minutes. This one brought tears to my eyes and my scream filled the house. They say to stay calm but I couldn't control myself. She was stiff, eyes rolling, face rigid, hands clenched into a ball.
Shortly after the ambulance and Josh rushed in, Ari was herself again. From then it was months of paediatrician and neurology appointments. Finally, a diagnosis of epilepsy - managed by Tegretol. We haven't had gene testing done but I also had the same diagnosis as a baby and grew out of it by three.
We were lucky that we had a good team behind us and Ari was absolutely thriving so we all decided that she would be weaned from her first birthday. We successfully weaned Ari, and in June we celebrated the arrival of her baby brother and one year seizure-free.
All was seemingly behind us, Ariana was spending each day living her best life. She loved her baby brother Dominic, went to the park daily, playgroup, swimming, gymnastics, the sky was the limit for our bright and beautiful girl. Until November 2020, when everything changed.
Last year, Ari got gastro. One night, Josh yelled out to me and I ran into her room, only to find Ari violently shaking with Josh standing over her in total panic.
Her seizure lasted three minutes but what followed this time was worse. The two previous seizures she snapped out of it with a cry but this time she woke slowly and struggled. In the ambulance she needed oxygen and they found her sugar levels dangerously low. She was fighting.
We ended up traveling to Wagga where the paediatric team could monitor Ari. We were so thankful for the staff there and at the hospital. Unfortunately that night, Ari had another seizure in Josh's arms.
Fast forward to today, Ari is taking her Tegretol twice daily, had another clear EEG, she's continued all her activities and actually started day care in February 2021 after her second birthday.
IN OTHER NEWS:
The fear of the future is overwhelming but I'm hopeful. I look at this clever girl and think how could she not achieve anything and everything she wants in life?
She can and she will. I couldn't be prouder. As for Josh and I, it's been a journey. We're quite triggered now by her vomiting and we're looking into seeking help, there is no shame in doing so. Kids vomit, it happens, it's a part of life. But our reaction when Dominic vomits compared to Ariana is significant. We panic and are taken right back to that morning when her body collapsed into the biggest seizure she'd ever had after hours and hours of vomiting. We're trying to look forward and leave the past behind us.
Ariana may be the face of epilepsy but it doesn't define her. When the Epilepsy Foundation asked me to share Ariana's story, I was truly honoured.
Ariana's diagnosis was something I kept to myself for so long, admittedly I was scared of how her life would change if everyone knew.
Well, it did change but guess what, it was for the better. Raising awareness is so important so I'm happy to be able to share the story of my beautiful Ariana and hopefully, it resonates with other parents out there.
