Eleven-year-old Ronnie Hood, like many kids his age, spent countless weekends engrossed in video games on his phone. So, when he started experiencing severe neck pain, his family doctor initially attributed it to strain from looking down at the screen.
However, the real cause turned out to be far more sinister. What was initially thought to be a simple repetitive strain injury was later revealed to be an incurable and deadly brain tumor.
Described as growing “like an octopus” around his brain stem, the prognosis was devastating. Tragically, Ronnie, from Sudbury, Suffolk, has only been given a few months to live.
For a year, Ronnie had endured excruciating neck pain before his parents took him to see their family doctor. Initially, the Year Six pupil was sent to a physiotherapist, but the prescribed exercises only made his pain worse.
Frustrated by the lack of improvement, his parents, Vicky and Nick, requested an MRI scan.
In February, the scan revealed a tumor shaped like an octopus near the top of Ronnie’s spine.
Further tests confirmed it was a diffuse midline glioma (DIPG), a rare and aggressive brain cancer affecting just 20 to 30 children in the UK annually, mostly between the ages of five and ten.
The tumor’s location and nature mean it has a grim prognosis, with most children surviving less than a year after diagnosis. Only two percent make it to the five-year mark.
A Family’s Desperate Effort
Nick described the moment they learned of Ronnie’s diagnosis as “being hit by a bus.” The news was shocking for a boy who had always been healthy and active.
Despite surgery and radiotherapy, the options for treating DIPG in the UK are limited.
Hoping for a miracle, his parents have turned to a promising drug, ONC201, which is currently being trialed in the US. They believe it could make a difference for Ronnie, who has a specific tumor mutation known as H3K27. To afford this treatment, they’ve set up a GoFundMe page with a target of £50,000 to cover the costs of traveling to the US.
The Financial and Emotional Toll
So far, the GoFundMe has raised £14,000. Meanwhile, Ronnie remains unable to return to school and is on high doses of steroids to manage the tumor’s swelling.
Unfortunately, these medications have led to significant side effects, including noticeable weight gain and facial swelling, which Ronnie finds distressing, especially as he becomes more self-conscious.
The steroids have also impacted his sleep and mood. Nick noted that in the four months since the diagnosis, Ronnie’s appearance and abilities have deteriorated, making it difficult for him to walk, talk, and participate in normal activities.
The Call for Change
Charlie Allsebrook from Brain Tumour Research expressed the heartache of Ronnie’s situation, emphasizing the indiscriminate nature of brain tumors. He highlighted the urgent need for investment in research to find kinder treatments and ultimately a cure, so that no family has to face the heartache of losing a child to this devastating disease.