Many of you know that Lia has not been well, but we wanted 100% confirmation of her diagnosis before we informed anyone. We got the shocking confirmation yesterday at a 3rd doctor in Morningside. The fool thar I am, I believed they had made a misdiagnosis and our world will return to normal. This is not the case.
Lia suffers from lissencephaly-pachygyria. Its where the brain stopped developing at about 24 weeks in my tummy. There is no way to pick this up before birth, because there are no symptoms. Its very rare, about 1 out of 100 000 births.
It basically means her brain is smooth on the outside and doesnt have all those dents and curls like we do. It is a severe case of this syndrome, there is no cure. It can only be managed through medication. Drs say she will remain a baby for the rest of her life and if not managed, she could have a very short life – this we will fight with the best doctors by managing her epilepsy. We are currently in Morningside mediclinic to repeat the EEG as the first one had very worrying results and showed that she was have seizures while she sleeps, even though you can’t see it. These are the seizures that the doctor needs to get under control so that it doesnt damage any of the brain.
At this stage we dont know if she will ever sit, talk or walk. We can do therapy to help her reach her potential in this world.
We as a family are devastated and heartbroken. The past 4 weeks have been incredibly difficult and we are exhausted. Poor Nélius is staying with Oupa and Nanna and I miss him so much.
I am in disbelief that this has happened to our family, 4 years after my brother’s sudden death.
My heart is broken. I’m tired, I’m worried and I dont know why this had to happen. Please keep us in your prayers, even though I’m having a very hard time in believing that there is a God that could be so cruel.
I will update you as things progress.
Thank you for the love and support.
Lia & Liézel
