Hello. This past week feels like something I lived through in fast forward, while also somehow standing completely still inside it. It started with a decision I wasn’t ready to make. Prof L van Niekerk, recommended by Prof Lamb, decided that Lia needed her Mic-Key tube placed in theatre the next morning (19 March 2026).…
There are moments in life when time seems to stretch and fold in strange ways. The past few weeks have been like that for us. Days that felt impossibly long, nights with almost no sleep, and moments where fear and hope lived side by side. It started slowly. Lia had been irritable for about two…
2025 has not been kind.So much is happening and yet it feels like nothing is happening at the same time.The return of Lia’s seizures due to HIPPS has been the final blow on a terrible cake. She had her second EEG on Wednesday and the results confirmed that she is still in HIPPS. Dr Lamb…
She had her fourth seizure on Sunday, and it was a very frightening one. For about a month I have noticed small changes in her behaviour, but it has been challenging to speak to Prof Lamb. He is double booked and fully booked until the end of time. Late Monday he came back to me.…
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…
Trying to get somewhere with Discovery Medical Aid. This is my little girl Lia. She was diagnosed with lissencephaly pachygyria in 2022. It means her brain didn’t fully develop. She is almost 3 and can not walk, sit or talk. It is a very rare disease. Yes Discovery Limited there are not ICD10 codes for…
Today Lia visited the orthotist Kirsten Gibson for measurements and fittings for a standing frame and splints to protect her tiny feet. The standing frame will give her core muscles time to get stronger as this is the biggest issue at the moment and its keeping her from learning to sit. Kirsten made moulds of…
After waiting three weeks for Lia’s new neuro physio appointment, I had so much anxiety. Both Lia and I fell in love with Sarah, her occupational therapist and me being the introvert that I am, it’s hard to let someone knew in. I knew from the start that I would have to choose between Sarah…
Lia saw Dr Lamb yesterday and he took a step back and couldn’t believe what he was seeing. He said “she’s a different child”. She laughed at him, smiled at him, looked at him and kept on kicking and pulling herself up on my lap. He said that HIPPS only clears up in less than…
This mom longs to hear her daughter speak but a rare brain condition means she can’t walk or talk She yearns to hear her little girl say her name, but her daughter has a rare neurological condition that affects her ability to walk and talk. But Liézel Els hasn’t given up hope that through medical…