News24.com | KZN girl diagnosed with deadly illness days after her 5th birthday

KZN girl diagnosed with deadly illness days after her 5th birthday

2018-10-27 10:20
Ariella Cocorozis.

Ariella Cocorozis. (Facebook)

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A family from Musgrave in KwaZulu-Natal is still coming to terms with the news that their five-year-old girl is suffering from a deadly, incurable disease.

Little Ariella Cocorozis, the only child of parents John and Emelia, celebrated her fifth birthday on September 17.

The next day, Emelia received a call from Ariella's teacher at Tree Tops Nursery in Durban. "I think you need to fetch Ariella," the teacher said. "She is lying on the floor giggling like a drunken sailor."

"This is not typical of her behaviour," family spokesperson Tassie Kougianos told News24 on Friday.

According to Kougianos, Ariella's parents noticed that she had become clumsy, but because she had an ear infection, they thought it was merely vertigo.

After taking antibiotics, Ariella was taken to a paediatrician, who tested her for a number of illnesses. After an MRI was done, Ariella was referred to a neurosurgeon.

On September 20, the family received the harrowing news that Ariella had diffuse intrinsic pontine gliomas (DIPG), which are highly aggressive, deadly brain tumours found at the base of the brain.

The diagnosis turned the family's life upside down in an instant.

Ariella
Ariella Cocorozis. (Supplied, Facebook)

Their daughter, whom they describe as "spunky and vivacious" and who loves singing, dancing and Havaianas flip-flops, was suddenly battling a deadly illness.

Ariella's tumour is in an area of the brain stem that controls many of the body’s most vital functions, such as breathing and heart rate.

There is no known cure.

With radiation, most children only survive for approximately nine months after diagnosis, and only 10% survive for longer than two years, according to Kougianos. Radiation is the only treatment currently offered, but it does not cure DIPG. It merely prolongs patients' lives.

According to the description on a crowdfunding page set up for Ariella, "the symptoms of DIPG develop very rapidly…these include problems controlling eye movements, speech, swallowing, walking and coordination".

"We were shocked when we were referred for palliative care," Kougianos said.

Palliative care is given to patients with life-limiting diseases and treats symptoms, but does not cure the disease itself.

"None of the top paediatric brain specialists would even see her after examining her scans."

ariella
Ariella Cocorozis. (Supplied, Facebook)

Dr Jai Reddy at Netcare Parklands Hospital eventually agreed to do the radiation – the only treatment that reduces the tumour, but doesn't remove it completely.

Without the radiation, Ariella's life expectancy is one month.

"It buys you more time... The prognosis is not good, her parents are praying for a miracle."

Kougianos says the once energetic and sparkly Ariella is now confined to her bed and she can't walk or talk clearly any more.

"If you knew Ariella before and you saw her now, you'd be shocked."

Parents John and Emelia were coping under the circumstances, says Kougianos.

A crowdfunding campaign has raised just over R180 000 of its R500 000 target to date. The family hopes to use the money should Ariella be accepted to a medical trial abroad – their only hope of saving the little girl's life.

"You have parents who accept [the diagnosis] and then you have parents who fight to prolong their child's life until a cure can be found."

ariella
Ariella with her dad, John. (Supplied, Facebook)

The family is also organising events to raise money: a dinner hosted by former Proteas cricketer Pat Symcox on November 1, a fundraising family fun day on November 10 and a golf day on November 14.

A Facebook page called For the Love of Ariella is regularly updated.

Neil Armstrong, the US astronaut who was the first human to set foot on the moon, and his wife lost their daughter Karen Anne, known as "Muffie", to DIPG in 1962, three months before her third birthday.

This video by US publication The Sun Herald explains the disease: