Thank you so much for visiting Ruben’s JustGiving page.

Today, 6th June 2025, marks Ruben’s 5th birthday — and we feel truly blessed to say he has now gone almost a full year without a hospital admission.

Ruben has faced an extraordinarily turbulent journey over these past five years. He lives with severe epilepsy, specifically a rare and complex condition called Lennox-Gastaut Syndrome.

When Ruben was just a few months old, we noticed unusual startle-like movements during nappy changes. Instinctively, I raised my concerns with our GP, but was reassured it was nothing to worry about. Sadly, just before his first birthday, everything changed. The movements intensified dramatically, and it became clear something was seriously wrong.

Ruben spent his first birthday in Alder Hey Children's Hospital, where we received the devastating diagnosis of Infantile Spasms, a catastrophic form of childhood epilepsy. Since then, his condition has evolved significantly. He experiences seizures every day and night, which have deeply impacted his development. He is unable to walk unaided and has endured multiple severe episodes, often resulting in prolonged hospital stays.

One of the most harrowing moments came last June, when Ruben had to be placed in an induced coma and admitted to ICU to break a relentless cycle of seizures.

And yet, through it all, Ruben continues to astound us with his tenacious spirit. No matter how many times he falls, he rises again with quiet determination and strength.

He is, without question, the most gentle, radiant, and charismatic little soul. People and animals alike are naturally drawn to him, he has a light that touches everyone he meets and as a family we are truly blessed to call him our own.

We believe Ruben is here for a very special reason. And to mark the beginning of his journey in giving back, we’ve decided that on 6th December 2025, Ruben will have his hair cut for the very first time. His beautiful locks will be donated to The Little Princess Trust, to help make real-hair wigs for children who have lost their own.

In addition, all money raised through this fundraiser will be donated to The Epilepsy Society, in support of their pioneering research into treatments and one day, we hope, a cure for epilepsy.

Even the smallest donation can make a meaningful impact. We are so grateful for your support and for helping us turn Ruben’s story into something truly powerful and hope-filled.

With heartfelt thanks and blessings,

R x