Roux's story

We are grateful to The Owen Family (Amy, Antony, Noah and Roux) for letting us share their story this #braintumourawareness month

Roux was born on 1st October 2019 with a swollen left eye, initially diagnosed as an infection. He struggled to feed and lost weight in his early days. Swabs of the eye and tests for jaundice came back negative and he continued to deteriorate. Eye drops were prescribed. Feeding was a struggle.

A midwife at a Sure Start centre felt uneasy, as Amy and Antony did, about Roux’s eye and weight-loss and chased up what Amy and Antony had been told was an ‘urgent referral’ that had been put in by a paediatric doctor, which hadn’t been put in as urgent at all.

At breaking point with Roux struggling each day, his mum and dad took him to A&E. Within hours he was in surgery at Leeds General Infirmary. He had six surgeries within a few weeks to remove what was an aggressive brain tumour and to fit a shunt to help drain fluid from his brain. His frail little body struggled to cope and he spent all his time on the high dependence unit. After the fifth surgery, his parents were told to start considering end-of-life care…

However, wonderfully, his 1st Christmas and New Year was spent at home. More surgeries were to follow the year after – eleven in all before Roux celebrated his 1st birthday, but he was putting on weight, giving lots of smiles, having fun with his big brother Noah and beginning to thrive.

There were more scans and seizures leading to hospital visits. These still continue and are terrifying for the family, but on 28th July 2021, following an MRI, Roux’s parents heard the phrase, “No obvious tumour.” Life is still tough for Roux and his family: seizures are still happening and the tumour has led to suspected sight loss in his left eye…but, his physiotherapy is going well and his smile is  one of the most wonderful things you will see (take a look at and try and tell us that we are wrong).

Having read all about Roux’s journey, it just hits home how much we rely on medical researchers, surgeons, doctors, nurses and other hospital staff and just how much more is needed to provide treatments and support and advice for people going through this. The early diagnoses which never mentioned brain tumours remind of us Marie and Ian’s battle to have further medical opinions on Oscar back in spring 2013.

But it is wonderful to see where Roux is now and we wish him, Amy, Antony and Noah all the happiness we can send (and a happy 3rd birthday to Roux for October 1st)  – and we will continue to strive to make things better for children like Roux and families like The Owens.



Read Antony’s own emotional words about the first few months here