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 treatment her 13-month-old daughter will one day be able to speak and call her mommy.
The single mom from Alberton in Ekurhuleni, Gauteng, moved heaven and earth to have a family of her own after her brother, Cornelius, passed away suddenly aged 32 in 2018.
“My brother was my best friend. It was almost like he was my twin but I was three years older than him. When he passed away in my arms in April [2018], I wasn’t okay. I thought about how my life was going to be without my brother, and in August that year I decided to start my journey to being a mom,” Liézel (40) tells YOU.
She started fertility treatment and used a sperm donor but it would take four disappointing attempts at in vitro fertilisation (IVF) and three failed intrauterine inseminations (IUIs) before she was blessed with twins Lia Amélia and Nélius, who were born in October 2021.
Though she had a healthy pregnancy, she went into early labour and her babies were born four weeks prematurely.
Lia came into the world first, weighing 2,6kg, followed by her brother, who was a bit heavier at 3,4kg. After spending 10 days in a neonatal intensive-care unit, the twins were discharged with a clean bill of health.
“We had no reason to worry whatsoever,” Liézel says.
But that all changed on 26 June.
“I was drying Lia after a bath when she just threw back her neck, her hands were really tight and her lips just made a fish-mouth shape. I could see it wasn’t an epileptic fit because she wasn’t shaking but a week before that she was quite irritated. She kept on swinging her head from side to side so I quickly took her to the emergency room,” she recalls.
Lia was diagnosed with a neurological condition called lissencephaly-pachygyria.
“It’s rare – only about one in 100 000 births. That means only 600 people in South Africa are diagnosed with it,” Liézel says.
“The condition means her brain is smooth on the outside and doesn’t have all those dents and curls that we do. It’s a severe case of this syndrome and there’s no cure,” she says.
She was devastated when doctors broke the news and told her that her daughter’s brain wouldn’t develop past that of a four-month-old baby and that Lia would probably not live beyond 10 years old, but she’s since made peace with it all.
“I just burst into tears. This isn’t remotely what I’d expected,” she says.
“When I look at Lia she’s just incredibly beautiful.”
At first, she battled to deal with her daughter’s diagnosis and was afraid to bond with her for fear of losing her.
“I just couldn’t, because why would I want to fall in love with her when I could lose her like my brother? I just couldn’t,” she reflects.
But she decided to make the most of her time with her little girl and started to research her condition when she learnt about renowned paediatric neurologist Dr Greg Lamb, who’s now treating Lia.
With his encouragement, Liézel has started a crowdfunding page where she’s been able to raise R65 000 in six months to help pay for Lia’s exorbitant medical costs.
“The financial implications are strenuous. You don’t think that something like this is going to happen. I’ve had to pay everything out of pocket,” she says.
Liézel works as a digital innovations, communication and design manager and relies on the support of her parents, Mariana and Neels, to take care of the twins.
Though motherhood has been hard, seeing her babies grow and interact with each other makes it all worth it.
“Nélius crawls to Lia and gives her a warm touch on her hand. It’s almost like she’s only realising he’s there now. Her brother knows that something isn’t right because the way he touches her is soft and he does this little fist pump thing, which is beautiful to see.”
Though she knows they have many obstacles to face in their journey together as a family, she remains hopeful that with intense occupational and speech therapy as well as physiotherapy, Lia will learn how to hold her toys, to walk and to say “mommy”.
“Medical-aid funds have run out. Doctors and therapists are crucial in her development, and I can’t let money stand in the way of her learning something new, her becoming the best she can be. There is hope. She can be able to learn to sit, talk and walk,” Liézel says.
You can donate to Lia’s Back a buddy page here
