Family's joy as toddler diagnosed with brain tumour at four weeks old prepares to start nursery

Roux in his nursery uniform Credit: Family picture

The parents of a two-year-old boy from Hull who was diagnosed with a rare brain tumour when he was just four weeks old have spoken of their joy as he prepares for his first day at nursery school.

Amy and Antony Owen feared they would never see their son Roux reach the milestone after he was diagnosed with a large, low-grade germ cell tumour (GCT) called an immature teratoma in October 2019.

Since then, he has had thirteen operations. After his fifth procedure, he was so ill, his family were told to consider end-of-life care.

Roux's father Antony said: "It felt like a hammer blow. All of our hope had been extinguished but Roux wasn't ready to give up and neither were we.

"We are so happy that Roux will be starting nursery. It's a day we never thought we would see, especially when we were told he was probably going to pass away."

Roux with his older brother Noah Credit: Family picture

The family have been working with the charity Brain Tumour Research to raise awareness of the disease.

When Roux was born, Amy and Antony noticed that his left eye was swollen. Doctors told the family it was probably related to the trauma of birth and was likely to settle down. But it was still swollen two weeks later, and Roux was also losing weight, and sleeping much more than would be expected of a new-born baby.

His parents took him to Hull Royal Infirmary where he had a CT scan which revealed a shadow. He was transferred to Leeds General Infirmary for emergency surgery.

While the tumour wasn't high-grade, it was very big and covered a quarter of his brain. Its position also made it difficult to reach. The doctors who treated Roux could only find one other identical case of it anywhere in the world.

Roux preparing to spend his first birthday in hospital Credit: Family picture

Roux spent months in hospital, during which time he fell ill with pneumonia and viral meningitis. He has also endured chemotherapy. Nine months ago, he started having seizures, which medical experts are currently struggling to control.

But his parents say that he has remained in good spirits, despite everything he has been through.

"Roux has been left partially blind - he appears to be 'winking' with his left eye - and is at continued risk of tumour regrowth and seizures. But he's an incredibly joyful and happy little boy when he's not in hospital. He lights up the room and you can't help but smile when you are in his company."

Roux will start nursery in September. His family say it is a huge step forward for him, and think it will do him "the world of good."

Hugh Adams from the charity Brain Tumour Research said: "We are so pleased that Roux will be starting nursery school and we all wish him the very best for his first day. He has already been through so much, so this is wonderful for him and his family.

"Brain tumours are indiscriminate. They can affect anyone at any time. Too little is known about the causes and that is why increased investment in research is vital."

Roux with his parents Antony and Amy, and his older brother Noah Credit: Family photo

Key facts about brain tumours:

  • Brain tumours kill more children and adults under the age of 40 than any other cancer

  • Just 1% of the national spend on cancer research has been allocated to the disease

  • Brain tumours are indiscriminate; they can affect anyone at any age

  • One in three people know someone affected by a brain tumour

  • In the UK, 16,000 people are diagnosed with a brain tumour each year

  • Brain tumours kill more children than leukaemia

  • Brain tumours kill more men under the age of 70 than prostate cancer

  • Only 12% of brain tumour patients survive beyond five years of their diagnosis compared with an average of 50% across all cancers

Source: Brain Tumour Research