I’ve been battling with whether I should write about the past month or not, but some of you have heard through my dad that Lia has had a rough couple of weeks.
On the morning of 5 August, just after 9, Lia had an epileptic seizure. I was in the bath at the time, but our domestic worker, Jane, shouted my name. I jumped out of the bath as I was and dropped to my knees when I saw Lia. The seizure was ending, and as I put my hands under her back, her lips were blue, her eyes weren’t blinking—she was just floppy, not responding to me calling her name. In that moment, I thought she was dead. Those blue lips will stay in my mind forever.
I kept shouting her name, using all the little nicknames I have for her, shaking her gently. Just as I was about to start CPR, she started moving and cried. I just held her, shocked to the core. Her first seizure in three years. Why now? What changed? What did I do wrong? What was wrong with my child? Was she getting sicker? All those questions are still in my mind.
After calming her down and putting her on the bed, I gave her Rivotril drops to prevent another seizure. I immediately grabbed my phone and messaged Prof Lamb. He replied quickly, asked for her age and weight, and later called me. He reassured me that everything was fine and that the seizure didn’t mean anything other than her Keppra dose being too low for her current weight. She’s grown so much since we saw him in May. He increased the Keppra to the highest dose suitable for her age.
It was a traumatic experience, and I didn’t really know how to process it. I had just started my new job and needed the next three months to go well. I don’t think I’ve ever been that stressed in my life. I work with amazing people who are incredibly supportive—truly a gift in the hard world we live in.
That night, I didn’t sleep at all. I watched Lia the whole time, listening to her breathing, wondering if she would have another seizure in her sleep. What if I didn’t wake up? What if I didn’t hear her? What if, what if, what if…
She was cranky, and I knew something wasn’t right. I kept wondering what I was doing wrong. I remember telling my mom that I felt like Lia wasn’t happy, that something was off. But then the next day came, she was a bit happier, and after a few nights of listening to her breathing, I finally slept.
Then, on Thursday 11 September, she had another seizure while my mom was looking after her. My mom described it to me, and it sounded worse than the first one, although her lips didn’t turn blue. Jane held her and spoke to her, and she was okay. My mom didn’t want to upset me while I was working on a huge project, so she didn’t tell me immediately. Only when I went to pick them up did she share what had happened. I couldn’t believe it. The same questions and worries came flooding back—just like three years ago. And that lingering fear… how long would her life be?
I grabbed my phone and called Prof Lamb. He answered immediately, calmed me down, and said that two seizures in five weeks didn’t mean it was out of control. I heard him shout to his receptionist, “What time can we see Lia Els tomorrow?” She replied that he was already double-booked, and he said, “Be here at 8 a.m. tomorrow.” I said yes, and he told me to stop worrying—he would just add something to the Keppra.
Friday at 5:30, I dropped Nélius off at my mom’s and Lia and I hit the Friday morning traffic to Zuid-Afrikaans Hospital. The road was a nightmare, and I remembered how I did it every single day for almost 20 years.
We arrived at 7, and I sat down to calm myself after the adrenaline rush from the traffic. I knew Prof Lamb double- and triple-booked patients, so I made sure we were first. He calmly called us in. Lia had fallen asleep from the medication, and he sat down and worked out the dosage on his calculator. He weighed her by holding her and adjusted the medication again.
He asked if I was okay. I asked if Lia could get brain damage from the seizures, but before I could finish my sentence, he stopped me and said, “NO.” He added Tegretol, another drug used to treat epilepsy, and worked out a schedule for me. With Tegretol, you have to increase the dosage slowly until you reach the calculated dose. I have to go from 2ml to 3ml, then to 4ml, and finally to 5ml. Once she’s on 5ml, I need to phone him so we can slowly wean her off Keppra.
He explained that at age 4, new neurons and hormones develop in the brain, which can trigger seizures. It may happen again around age 8 and then again at 11.
I’m not going to lie—it’s been a tough year, a stressful two months, and a nightmare five weeks worrying about Lia. She isn’t sleeping well, so I’m very tired. But I have Nélius, I have my job, and I have my parents. So I fight through the fatigue and the worry and show up—as a mother, a daughter, and an employee of a life-changing company.
We’re okay. I thank my mom and dad for helping me, and I thank my new friends at Rare Diseases SA for being so understanding and emotionally supportive.
That’s my story for now. I’m exhausted, watching her sleep, listening to her breathing. Thank you to those who have supported me and shown such interest in our journey.
Love,
Liézel
