Why I’m stepping into the ring for Louisa

On 19 January 2027, I’ll be stepping into a boxing ring at Midnight Mayhem during ICE Barcelona.

As someone who cannot remember the last time he threw a punch in anger, taking part in a boxing match is well outside my comfort zone. There will be months of training, early mornings, hard rounds and, almost certainly, quite a few punches coming back in my direction.

But I’m doing it for someone incredibly special. My niece, Louisa.

Louisa and I have always shared a special connection. It is difficult to put into words, but whenever we are together, she seems to find me and connect with me in her own unique way. Out of all the people in the room, there is often a little moment between us. A look, a smile or simply a sense that she knows I am there. I have always felt incredibly lucky to have that relationship with her.

Louisa has an exceptionally rare genetic condition caused by a spontaneous variation in the ZNF865 gene.

It is difficult to explain just how rare her condition is. Most medical conditions come with information, research, recognised symptoms and some idea of what the future might look like. For Louisa and her family, there has been no clear roadmap. There is extremely limited medical knowledge about her specific genetic variation, very little research to draw upon and only a tiny number of families facing anything similar.

That rarity brings its own challenges. There is no handbook explaining what will happen next, no established treatment pathway and often no simple answer when her family has questions about her development or future. Much of Louisa’s journey has involved learning as they go, celebrating every step forward and adapting to challenges without knowing exactly what may come next.

Her condition affects almost every part of her daily life, including her development, communication, mobility, muscle tone and sensory processing. Many of the things most of us take for granted require considerable effort, specialist support or constant supervision for Louisa.

But that description does not tell you who Louisa is.

Louisa is funny, loving, joyful and completely unique. She brings enormous happiness to the people around her and has taught our entire family more about patience, inclusion, perspective and unconditional love than we could ever have learned elsewhere. Her disability is part of her story, but it does not define her value or the happiness she brings into the world.

We are a close family, with lots of children growing up together, and watching Louisa’s journey alongside theirs has given all of us a different perspective on what really matters.

She has taught us not to take everyday moments for granted, and to celebrate achievements that others might easily overlook. Every milestone is hard-earned, every step forward is significant, and through Louisa we have all gained a deeper appreciation for resilience, patience and the incredible difference that the right support can make.

Above all, she has shown us how important it is that every child is given the opportunity to feel included, valued and able to thrive in their own way.

That is why I am raising money for Lexden Springs School, where Louisa is a pupil.

Lexden Springs provides specialist education, care and support for children and young people with complex disabilities. It gives its pupils an environment in which they can develop, build confidence, experience new things and reach their own individual potential.

The school also provides something incredibly important for Louisa’s family. The reassurance of knowing that she is somewhere safe, understood and supported by people with the specialist skills to care for her.

Families caring for a child with complex needs face challenges that most of us will never fully see. Behind everyday family life can be constant supervision, medical appointments, disrupted sleep, difficult decisions and the emotional strain of worrying about a child’s health and future. It is a responsibility that does not simply stop at the end of the day.

For Louisa’s family, the support provided by Lexden Springs offers valuable breathing space. It gives them the confidence to know that Louisa is being cared for, encouraged and given opportunities to thrive. That respite and reassurance are enormously important, not only for Louisa, but for the wellbeing of the whole family.

The Lexden Springs Appeal helps fund educational and play equipment, activities and experiences that enhance what the school can provide. These things can make a meaningful difference to the lives of Louisa, the other incredible children who attend the school and the families who support them every day.

I cannot change Louisa’s genetic condition or remove the challenges she and her family face. I cannot provide the answers that medical science does not yet have. But I can step into a boxing ring, push myself through the training and hopefully raise as much money as possible for a school that gives her opportunities, support and happiness, while also providing vital reassurance and respite for her family.

Every training session, every round and every punch will have a purpose.

Any donation, no matter the amount, will mean a great deal to me and my family. More importantly, it will help Lexden Springs continue creating opportunities and special experiences for Louisa and children like her, while supporting families whose strength and sacrifices often go unseen.

Thank you for supporting me, Louisa, her family and Lexden Springs School.