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It was a week before she was due to start high school and she had her life all mapped out. After matric she would head off to study at New York University in the Big Apple in the US.
She wasn’t quite sure what she would study but was fascinated by the National Aeronautics and Space Administration (Nasa).
But instead of reaching for the stars, Demi Blaauw's life changed in the blink of an eye.
In January last year the 13-year-old was in the bathroom at her mom Olivia Blaauw’s home in Roodepoort when she suddenly collapsed.
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Olivia recalls that traumatic moment. It was around 6.30am when she heard Demi in the bathroom. “I thought she was crying so I went to check on her. I found her lying on the floor – she couldn’t move or speak.
"She was just hitting her temple and saying, ‘Good, no good’.”
Demi was rushed to Life Flora Hospital in Roodepoort where a magnetic resonance imaging (MRI) scan was performed. The results weren't good. Demi had suffered a brain haemorrhage due to a congenital vascular condition.
Doctors found that Demi had an arteriovenous malformation (AVM), which is an abnormal bunching of the blood vessel. It had suddenly burst and started filling the left hemisphere of her brain with blood.
Professor Andre Mochan, a neurologist at Netcare Rehabilitation Hospital, says that AVMs are rare, and occur in less than 1% of the population.
“They may be completely asymptomatic, or can cause headaches, seizures or stroke-like events. Bleeds or haemorrhages are a fairly rare manifestation of AVMs, but can be potentially catastrophic,” he says.
He adds that a rupture or bleed can occur out of the blue, sometimes provoked by heavy straining. They can also be brought on with the use of blood-thinning medication.
Demi’s father, Damien Blaauw, says when they arrived at the hospital an emergency craniotomy had to be done on Demi to stabilise her. This is a surgical procedure where a bone from part of the skull is surgically removed to expose the brain.
“The neurosurgeon told us that due to the swelling if they didn’t perform the procedure her brain would start to push into her spine and she could die.”
After two weeks at Life Flora Hospital, Demi was transferred to Netcare Milpark Hospital in Parktown where she needed two more procedures.
“She was almost completely paralysed on the right side of her body and unable to walk. The haemorrhage also affected her vision,” Professor Mochan explains.
The first procedure was an angiogram, which according to Damien, helped doctors locate where the brain bleed was occurring.
Then she had an embolisation during which doctors stopped the bleeding in the vessels.
After the surgery Demi wasn’t able to move the right side of her body or speak, but that didn't stop her taking her phone in her left hand to go on TikTok and to check her messages, much to the amusement of her dad.
Damien says doctors were surprised that she was able to use her phone after such a traumatic injury.
Demi faced intensive therapy with an army of experts, including a rehabilitation neurologist, a psychologist, a physiotherapist, speech and occupational therapists and a social worker to support her and her family.
Damien says she was given a 10-week plan at the rehabilitation centre, and she exceeded everyone's expectations by meeting all of the deadlines way ahead of schedule.
Demi also suffers from the speech disorders aphasia and apraxia, so sometimes she’s very talkative then there are days when she finds it difficult to speak. Aphasia affects the part of the brain that controls language expression, while with apraxia the brain struggles to control lip, jaw and tongue movements.
School was out of the question. Now, after a year at home, she has started at a special-needs school in Randburg, which focuses on more skilled-based work and even there she is exceeding her parents’ and teachers’ expectations.
Because of the steep cost of the new school and therapy sessions, the family started selling baked and fried goods to raise money. They also hosted fundraising concerts at the Barnyard Theatre.
Despite all challenges, the family are optimistic about her future. Damien has started a Facebook page, Tick-Tock for Demi, where he documents his daughter's journey.
She's slowly regaining her independence. Its been over a year since she collapsed and she refuses to use her wheelchair. She now walks on her own.
And when she isn’t at school or in therapy, Demi is in the kitchen baking or cooking. Her dream now is to complete school and open a coffee shop where she'll sell her delicious baked goods.
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Demi’s medical journey is to become a case study at Netcare for doctors to learn from.
Professor Mochan says her long journey to recovery will require much energy and willpower, but she is a beacon of hope for others.
“Her example will encourage other patients and families going through similar trauma," he says.
Extra sources: Netcare, Science Direct
