At just 6 months old, little Otto has been diagnosed with Krabbe leukodystrophy. A rare and devastating genetic condition that affects the nervous system. Krabbe disease damages the protective coating around the nerves, which means babies gradually lose important abilities such as movement, feeding, vision and fatality. It is incredibly rare, affecting roughly 1 in 100,000 births, and for families like Ella and Kieran, life changes in an instant following a diagnosis like this. No parent should ever have to hear words like these about their child, yet they are now facing a journey filled with uncertainty, hospital appointments, difficult decisions and emotional heartbreak, all while trying to treasure every possible moment with their little boy in the little time Otto has been given.

To try and support them in any way I can, and to help raise awareness of this cruel disease, I will be running the full length of the Trans Pennine Trail which is around 215 miles. This challenge is going to push me physically and mentally, but it is nothing compared to the strength Otto is already showing every single day, and the courage Ella and Kieran now need as they navigate a reality no family should ever have to face. Every mile I run is for Otto. Every donation, no matter how small, will go towards helping support the family with whatever they may need during this unimaginably difficult time. Whether that’s specialist equipment, travel to appointments, time away from work, or simply creating precious memories together.

More than anything, I want this fundraiser to spread awareness. Before Otto’s diagnosis, many people, myself included, had never even heard of Krabbe leukodystrophy. Rare diseases often go unseen and unheard, yet they completely change the lives of the families living through them. If sharing Otto’s story helps even one more person understand this disease, support rare disease research, or appreciate how precious life and health really are, then that awareness matters.

Please help me support Otto, Ella and Kieran however you can. Whether you donate, share this page, or simply take a moment to read Otto’s story, thank you. It truly means more than words can say.