£15k raised to help 'fighter' Yoan to treat rare brain tumour

Yoan brain tumour

Yoan, 8, has a rare and aggressive type of brain tumour but his parents hope new medication from Germany will help - Credit: Monika Zhivkova

A family's fight to help their eight-year-old son undergoing treatment for a rare and aggressive brain tumour has raised £15,000 towards medication they believe can help. 

In January, "the nightmare began" for Yoan Zhivkov, from Martlesham Heath, started to experience painful headaches. After several hospital trips and an MRI in March, his family were told he had a large tumour.

The then seven-year-old underwent surgery at Addenbrooke's Hospital four days after the diagnosis.

Monika Zhivkova

Yoan's parents are originally from Bulgaria, which is where they visited over the summer - Credit: Monika Zhivkova

Surgeons told his parents Monika and Iliyan they were able to remove around 90% of his tumour.

But in April, when doctors found the tumour was rare and aggressive they gave Yoan three months to live and said to his parents they "should go and live how they want to".

More than six months later, Yoan is still fighting.

Monika said: "He's a very strong boy because there were no side effects at all, only his hair."

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His parents have found an alternative, but costly medicine, called ONC201 which they believe could help. 

Though thanks to a GoFundMe they were able to raise the required £12,000 in less than a day.

Monika Zhivkova

Yoan enjoys playing with Lego and Minecraft - Credit: Monika Zhivkova

Before 2021 Yoan was a "normal boy with a normal life" said mum Monika who said all of their lives have been turned upside down after he started having headaches.

The mum-of-two said the surgeons did an "amazing job" because they removed almost everything with almost no side effects.

"He was the same boy", she said, and able to return home after five days.

Despite this, the family were told there was no medication or chemotherapy that could help. Yoan went through 13 sessions of radiotherapy.

Monika Zhivkova

Yoan with his brother and parents - Credit: Monika Zhivkova

Determined Yoan went back to Kyson Primary School, in Woodbridge, the day after his last radiotherapy session.

His older brother Mariyan grew his hair for 18 months and has donated it to The Little Princess Trust.

Monika Zhivkova

Yoan and his brother Mariyan - Credit: Monika Zhivkova

Over the summer they celebrated Yoan's 8th birthday and went to Bulgaria for a month, where they went to mountains and the beach, and Yoan "was very well, jumping, running and swimming".

When they returned to England so did Yoan's headaches.

Doctors were surprised that he was doing so well so many months after his diagnosis, but the scans showed how the tumour was growing back and causing swelling in the brain.

"Now he's not very well," Monika said. "It's hard."

Monika Zhivkova

Mariyan and Yoan - Credit: Monika Zhivkova

After discovering a potential medicine, ONC201, she set up a fundraiser, which raised thousands in 12 hours.

Monika added: "I was thinking if we couldn't raise this amount of money, what would we do?"

The family have sought the advice of a German doctor about the medication. He had advised the family that while he cannot be certain it will 100% help, he believed the chances were 30%. 

While the chances aren't high they say "it's better than zero" and preferable to medication that only helps with the pain.

When Yoan is feeling better he likes watching Mr Bean cartoons and his favourite Youtuber DanTDM.

He also likes to play Minecraft, Super Mario and with Lego.

Monika Zhivkova

Yoan is a big fan of Minecraft and spends lots of time watching his favourite Youtuber DanTDM - Credit: Monika Zhivkova

Due to his illness, Yoan hasn't been able to go to school but sometimes visits for a few hours as "all of his friends are in school".

"His school always help us," Monika said. "His headteacher is amazing, Mr Gunson, he helps us, even with the fundraising."

For now all Monika and Iliyan can do is hope the medication, which they have now ordered, will be successful and Yoan will begin to recover.

If you would like to help Yoan, visit the fundraiser here: gofundme.com/f/help-yoan-in-his-fight-with-the-tumour.

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