Special needs

Amyoli Ngewu is magic!

IN MANY WAYS, Amyoli Ngewu is a typical 5-year-old. She loves ballet, practically lives in her swimming costume and runs everywhere. “She says she’s Caster Semenya!” laughs her mom, Sammie (26).

She also adores school. This is her third year at St Vincent School for the Deaf in Johannesburg, and last year she had a lead role in the school’s performance of Disney and Pixar’s Inside Out. “She’s that child that they would pick, because she’s not shy. She loves people!”

Yet Amyoli’s first years have been anything but straightforward. When she was 7 months old, her mom noticed that she wasn’t babbling like other babies. She didn’t enjoy playing with toy rattles and wouldn’t respond to loud sounds.

PROFOUND DEAFNESS

Doctors soon confirmed Sammie’s fears: Amyoli was deaf. She was diagnosed with congenital bilateral sensorineural hearing loss, which means she was born deaf in both ears. She also has auditory neuropathy spectrum disorder (ANSD).

In 2014, Sammie described the diagnosis as a “tremendous blow” that left her “confused, bewildered and sad”.

Despite feeling vulnerable and overwhelmed – especially after Amyoli’s dad left the family – Sammie tackled her new challenge with everything she had. She did research, took Amyoli for speech and occupational therapy (her inner ear damage had a severe effect on her balance and movement), and they both started learning South African Sign Language.

However, Sammie still hoped for “total communication” – in other words, verbal speech. A cochlear implant, she hoped, would bring them closer to that dream.

COCHLEAR IMPLANT

An implant bypasses the damaged parts of the inner ear by sending electronic signals straight to the auditory nerve. Implants can’t cure deafness, but can help the brain process sound better.

Sammie’s medical aid agreed to cover a big portion of the cost, but she was still left with a R80 000 shortfall. What’s more, to get the most out of her implant, Amyoli would need intensive speech therapy for years after the operation.

Sammie took to Twitter. “Let’s rock her world,” she wrote in one of her pleas for funding. After a journalist picked up Amyoli’s story, donations started coming in. A big corporate sponsorship finally helped them reach their target, and so in August 2014, Amyoli got her implant from the University of Pretoria’s Cochlear Implant Unit.

It took Amyoli a little while to get used

to her new world of sound. Before long, however, she started pointing out noisy buses, learnt new words, and experienced the sound of rain for the first time.

CHALLENGES

Amyoli can now hear loud sounds and noise, including the sound of oncoming cars, which has given Sammie more peace of mind for her safety. But while the implant has done wonders for Amyoli’s hearing and balance, mother and daughter still face many challenges.

For one, speech therapy is very costly. And then there’s the concern that somebody will snatch the processor the child wears, thinking it’s an expensive bluetooth device. “I’m always on the lookout,” says Sammie. “We have to protect it with all we’ve got, because it’s so expensive and so precious to us.”

And even though Amyoli now responds to sound, her reactions are still delayed. “At the end of the day, she’s still a profoundly deaf child. When the implant is off, when it’s bath time, she’s deaf.” So when they want to communicate then, they have to sign.

A BEAUTIFUL LANGUAGE

South African Sign Language (SASL) is Amyoli’s first language. “It’s a beautiful language,” says Sammie. “It really is.” Because of SASL, Amyoli is now able to tell her mom about her day at school, and she’ll be able to tell her if something bad happens or somebody mistreats her.

Signing has also taught Sammie a lot of patience. “You can’t just ask, ‘How are you?” when you’re walking home and you’re two steps ahead of her. I’m so patient now. I’m never in a rush. I will put everything down on the side of the road, and then we talk.”

Communicating with her daughter is something she’ll never take for granted. “I’m always telling her that she matters. That she can be anything. This year, I told myself to stop worrying about therapy and money and everything else. We’re going to focus on keeping every dream alive.”

“I want her to be the best she can be, because she is magic.” YB

I’M ALWAYS TELLING HER THAT SHE MATTERS. THAT SHE CAN BE ANYTHING