Parents’ pride and joy as girl with rare condition blossoms
Born with a rare condition, Amalia faces many challenges but this happy little soul is blossoming
IT’S just a tiny three-letter word but hearing it means the world to them. Three-year-old Amalia Adams can’t walk, crawl or do anything healthy children her age can do – but recently, she started saying the word “Mom”. And her proud parents never get tired of hearing her saying it – it’s such a relief because for years Shaaqira Sallie (27) and Taahir Adams (30) from Crosby in Johannesburg wondered if they’d ever hear their child speak.
Just a few months after her birth in 2017, Amalia was diagnosed with Dandy-Walker syndrome (DWS), a rare congenital malformation of the cerebellum – the part of the brain that controls movement. At age four, she still can’t walk and her parents move her around in a specialised pram.
To make matters worse, she has a range of other conditions, including hydrocephalus which causes fluid buildup in the brain and hypotonia (low muscle tone), and her little body is often racked with muscle spasms.
Yet amazingly, despite all these challenges, Amalia has maintained a bright and positive attitude – and she’s blossomed even more since starting at a special needs school two weeks ago.
“She’s the happiest child,” Shaaqira says. “She has this thing now where she’s found her voice. If she screams, we know she wants our attention!”
SHAAQIRA and Taahir knew something was wrong with their baby when she started twitching a week after her birth. The worried parents took Amalia to Netcare Sunninghill Hospital to have her checked out.
“Doctors said we should wait three months for the twitching to go away because it’s normal for a newborn to make funny movements,” the mom of two says.
But after three months, things went from bad to worse.
“She had a full-on seizure and we rushed her to the hospital again. They did the MRI on her brain and a CT scan.”
Amalia’s parents were given the devastating diagnosis that would change their lives forever: their daughter had a rare disease that affects only 1 in 2 500 children worldwide.
People with DWS often suffer a whole array of other problems.
“Her next diagnosis was water on her brain and then we saw that the middle part of her brain was missing, which is called agenesis of the corpus callosum,” Shaaqira tells us,.
There are no accurate statistics on people with the syndrome in South Africa. For all the couple know, their child could be the only one.
Because of the dearth of local information and case studies, doctors have been “treating and learning” Amalia’s condi
tion as they go along, Shaaqira says.
The tot has undergone numerous surgeries and therapies to make life more comfortable for her.
At three months old, a device called a ventriculoperitoneal shunt was placed in her head to drain the excess fluid into her stomach.
In 2019, her parents opted to have a G-tube peg inserted into Amalia’s tummy, to assist with her feeding.
“Whenever we fed her, she’d aspirate and something would go into her lungs and cause pneumonia, so we were constantly in the hospital because of that,” Shaaqira says.
“The feeding peg was the best decision we ever made because it’s keeping her out of the hospital.”
Somewhere down the line Amalia will need splints for her feet.
“It looks like she’s got clubfoot, so doctors are trying to correct that,” Shaaqira says.
Amalia needs six different therapy treatments every week, including physio and speech therapy. She also wears special spectacles to correct her eye movements.
As a result of all of this, Shaaqira had to give up her job as a paramedic to look after her daughter full time.
“She needs to be fed five times a day and her medication must be given five times a day. I also need to make sure she’s in the correct position. If she’s lying down, she’ll throw up so we need to watch her constantly.”
Taahir, who’s a freelance graphic artist, is the family’s sole breadwinner, and it’s a bit of a challenge paying for all the treatments and medication Amalia needs. But while it was hard at first, the family has learnt to adapt.
“Before it was hectic. But right now, I’m okay because she’s okay and happy,” Shaaqira says.
Luckily Amalia’s sibling, Zunairah (9), is always happy to pitch in and help.
“I’ve involved her in everything, so she knows how to feed her sister, she knows how to change her,” Shaaqira says.
The pandemic has presented a big worry for the family, as Amalia could get seriously ill if she contracted Covid-19.
“Her doctor said to us we should enforce a hard lockdown. We weren’t allowed to go anywhere,” Shaaqira says. “We even had to stay away from our family.”
DESPITE the numerous hurdles, the family is optimistic about the future.
They’re renting a home at the moment but hope to purchase a house soon to make daily life easier for Amalia.
“We want to get her room set up for her,” Shaaqira says. “We’ve got a hospital bed for her now, so we want to make her room as comfortable as possible. We also hope to install ramps in there.”
Amalia, who loves spending time in nature, is in her element going to school, her mom adds.
“For her, it’s amazing, for me not so much,” she says. “It was hard seeing her going out into the world for the first time.”
Amalia heads off to the special needs Wandsworth School every day and the couple have hired a nanny who goes along to supervise her in class.
She loves seeing how much her daughter enjoys school and how she’s blossoming from interacting with the five other kids in her class.
“She’s changed so much. You can see she’s happy. When we tell her she’s going, she laughs and babbles. She baked cupcakes and brought them home, and she made a Valentine’s Day card.”
As they chat to us via video call, Shaaqira and Taahir are both wearing black T-shirts and purple and blue ribbons. They explain it’s in honour of Amalia. The pair have started an NPO called Aspirations for Amalia to raise awareness of her syndrome.
If there are other kids with the condition, the couple would like to reach out to their parents if they need help with equipment and medication or simply want a sympathetic ear.
“We’d like to spread the message about Dandy-Walker,” Taahir says.
The couple also hope their story will inspire parents of kids with special needs who feel despondent because they don’t always know how to help their children.
“We’d like to say that it’s okay, that it’s fine,” Taahir says. “You’re not alone.”
‘I’m okay because she’s okay and happy’