A mother from Young shares the story of her daughter, Ariana, 2, who was diagnosed with epilepsy when she was four months old.
Leah Sullivan says she hopes this story resonates with other parents and families who have gone through or are going through a similar journey.
Ariana’s story told by mom, Leah
When Ariana was four months old, she had her first seizure. I heard her stir ready for her midnight feed, but when I went to place her against my chest, I got no response. I started to panic after I rubbed her chest and called her name, still getting nothing from her.
I woke up my fiance Josh by saying “something’s wrong with Ari, she’s not responding”.
Two minutes later; break. Her eyes opened and she let out a huge moan. We took her straight to the hospital after a long night of blood tests, EEG, monitoring, and a very happy baby, they let us go. All the tests had come back clear. It sounded like a seizure, but the doctors hoped it was a one-time event. We were relieved, our baby was fine.
But two nights later, we were back in the hospital. I was lying in my bed next to Ari when she had her second seizure, which lasted two minutes. This one brought tears to my eyes and my cry filled the house. They say keep calm but I couldn’t control myself. She was stiff, her eyes rolling, her face rigid, her hands clasped in a ball.
Shortly after the ambulance and Josh rushed over, Ari was herself again. From there, it was months of appointments with pediatricians and neurologists. Finally, a diagnosis of epilepsy – managed by Tegretol. We didn’t do any genetic testing, but I also had the same diagnosis as a baby and grew up at three.
We were lucky to have a good team behind us and Ari was absolutely on the rise so we all decided she would be weaned from her first birthday. We successfully weaned Ari and in June we celebrated the arrival of her little brother and a year without seizure.
Everything was apparently behind us, Ariana was spending each day living her best life. She loved her little brother Dominic, went to the park every day, playgroup, swimming, gymnastics, the sky was the limit for our bright and beautiful daughter. Until November 2020, when everything has changed.
Last year Ari suffered from gastroenteritis. One night Josh yelled at me and I ran into his room, only to find Ari shaking violently with Josh standing above her in total panic.
His seizure lasted three minutes but what followed this time was worse. The previous two seizures she came out of with a cry but this time she woke up slowly and struggled. In the ambulance, she needed oxygen and they found her blood sugar dangerously low. She was fighting.
We ended up heading to Wagga where the pediatric team could watch Ari. We were very grateful for the staff there and at the hospital. Sadly that night Ari had another seizure in Josh’s arms.
Fast forward to today, Ari takes her Tegretol twice a day, had another clear EEG, continued all of her activities and actually started daycare in February 2021 after her second birthday.
The fear of the future is overwhelming but I have high hopes. I look at this smart girl and think how could she not achieve anything and everything that 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 are quite triggered now by his vomiting and we are looking to ask for help, there is no shame in doing so. Children vomit, it happens, it’s part of life. But our reaction when Dominic throws up in relation to Ariana is significant. We panic and are taken back to that morning when her body collapsed in the biggest seizure she’s ever had after hours and hours of vomiting. We try to look ahead and put the past behind us.
Ariana might be the face of epilepsy, but that doesn’t define her. When the Epilepsy Foundation asked me to share Ariana’s story, I was truly honored.
Ariana’s diagnosis was something I kept to myself for so long, admittedly I was afraid of how her life would change if everyone knew it. Well that has changed, but guess what, it was for the better. Raising awareness is so important that I am happy to be able to share my beautiful Ariana’s story and I hope it resonates with other parents.