WHAT started as a simple viral illness rapidly escalated, leading to three-year-old Doon Heights resident Olivia Pretorius needing emergency paediatric care, extensive testing and scanning so that she can once more be the energetic, vibrant girl her parents, family and friends know and love.

Her doting mum, Romé Momberg, said that Olivia stayed home from her crèche, Storks Nest Day Care, during the week from November 10 as she was suffering a high fever.

“She was home with me and I treated her for a high fever during the first two days, thereafter it was a moderate fever. The symptoms would come and go and she developed a rash, including small spots inside her mouth on November 13. I thought it was a fever rash but didn’t rule out measles. She seemed to get better over the weekend and I sent her to crèche on November 17,” said Momberg.

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During that evening, Momberg noticed she was more tired than usual, but chalked it up to Olivia recovering from her previous illness.

“On November 19, I noticed she was really lethargic and had a mild fever again. The next day, her behaviour changed. She became increasingly tired, less responsive and was not herself. That evening, her condition deteriorated rapidly to the point we knew something was seriously wrong,” said Momberg.

Momberg said that she and Olivia’s dad, Conway Pretorius, rushed her to Kingsway Hospital, where the emergency team recognised the urgency of her condition. She was subsequently admitted under paediatric care, where doctors worked swiftly to stabilise her, run tests and arrange for a transfer to the intensive care unit (ICU) at St Augustine’s Hospital.

“It was one of the most frightening and heart-stopping days of my life as a mother. We will never be able to thank Dr Camilla John and her team enough for how quickly and decisively they acted for our little girl. No hesitation, no delay, just instinct, experience and action. Olivia was in respiratory distress and showing signs of encephalitis. Once in ICU, Olivia underwent extensive investigations, including a computed tomography (CT) scan, lumbar puncture, blood work and a magnetic resonance imaging (MRI). The MRI gave us the answer. Olivia has Acute Disseminated Encephalomyelitis (ADEM),” explained Momberg.

It is an inflammatory condition where the immune system mistakenly attacks the brain and spinal cord. This is often triggered by a viral illness, and Momberg added that in retrospect, the rash, fever and ongoing symptoms were the early signs, followed by subtle neurological changes that only worsened over time.

Currently, Olivia is receiving high-dose steroids to reduce the inflammation, and the family hopes to see improvements in the coming days as the swelling in her brain begins to settle. Momberg said that only when Olivia becomes more responsive will the team be able to assess her needs for physiotherapy, and occupational and speech therapy.

Stork’s Nest teacher, Meg Curich, said that during her week of crèche, Olivia went from a happy, gentle and loving girl who loved playing with her friends and dancing, to being unresponsive and not at all herself.

“The children in our care become like our own and we are heartbroken along with Olivia’s parents. We appealed to our parents for donations towards Olivia’s medical bills, and my colleague Chanelle Vorster and I opened a Back-a-Buddy account to help out,” said Curich.

Momberg said that the family’s medical bills have risen into the hundreds of thousands. She added that though it is a long road, she and Conway remain hopeful and deeply proud of their brave girl. She hopes that Olivia’s story can bring about awareness for other parents.

“Spend time with your children, observe them. Know their patterns and routines. For me, what gave it away was that there were no other symptoms. I noticed when she became more sleepy than usual. That was the first red flag. The minute a child that is normally active and talking talks less or becomes less responsive, you need to act. It is a sign of something more than just a simple illness,” said Momberg.

How ADEM affects the body

The immune system becomes overactive and mistakenly attacks the myelin, which is the protective coating around nerve fibres in the brain and spinal cord.

When the myelin becomes inflamed or damaged, signals in the brain do not travel normally. Consciousness, movement, speech, co-ordination, and behaviour can be affected. Children can become very sleepy, confused, weak, or unresponsive.

Symptoms include fever, headache, vision loss, muscle weakness, and unsteadiness. Most children experience a full or near-complete recovery and the disease typically occurs only once. In some cases, it can reoccur, and severe neurological damage is occasionally seen.

How you can help

Should you wish to assist the family with their ramping medical bills, you may use the following banking details:

Account holder: R Pretorius

Bank: Bidvest Bank

Account type: Savings

Account number: 15550023001

Branch code: 462005

Reference: Olivia

Alternatively, visit the following website to donate to Olivia’s BackaBuddy: www.backabuddy.co.za/campaign/olivia-pretorious or contact Romé Momberg on 072 888 7436 for more information.

@sun.newspapers

Three-year-old Olivia Pretorius is on the road to recovery following the diagnoses of an autoimmune disease.

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