Stories

Alfie's story

Alfie's story

Alfie Thomas was diagnosed in July 2013 after months of symptoms including balance and co-ordination problems, sleep disturbance and abnormal eye movements.

He died almost a year later from an incurable tumour called diffuse intrinsic pontine glioma (DIPG).

Alfie's mum, Zoe, said: “HeadSmart is such an important campaign and one we wholeheartedly support. When Alfie became unwell, we had no idea what was wrong with our little boy.

“Despite numerous visits to our GP and local hospital, Alfie went undiagnosed for months. As his mum, I knew something was not right with Alfie and I began to feel frustrated that I still did not have any explanation for his symptoms. In July 2013, we took Alfie into the hospital and refused to leave until something was done for our son. We didn't know it then, but Alfie had six symptoms of a brain tumour.

“Later that day, Alfie was taken in for a scan which revealed a large tumour on his brain stem. I still remember the fear and heartbreak when we were told it was terminal. Alfie was just five years old.

“If we had had access to a HeadSmart card at that time, I would have seen that Alfie had many of the symptoms. I could have shown the GP and perhaps my concerns would have been taken more seriously.

“Although DIPG could not have been cured, Alfie deserved to be diagnosed and treated, instead of spending precious months back and forth in our search for answers. Every parent and GP should be aware of the symptoms of a brain tumour.

“The HeadSmart cards are vital to raising awareness of the symptoms and helping save lives."

After Alfie's death, his family – including Zoe, dad Danny and older brothers Tyronne and Ryan – set up Alfie's Journey Fund to raise money for The Brain Tumour Charity.

So far, the fund has raised more than £80,000 for research into paediatric brain tumours.