Overcoming Obstacles From Painting To The Field

Navigating the challenges associated with neurodegenerative conditions has always been an arduous journey, filled with ups and downs. Living with spinal muscular atrophy (SMA) feels akin to managing a full-time job, particularly on days that demand my constant attention and energy.

Overcoming the obstacles of neurodegenerative conditions

While SMA may weaken my muscles, it can never diminish my spirit or determination. There are days when I wake up feeling invigorated, ready to tackle my work and embrace the day ahead. Conversely, there are other days that feel like a struggle from the moment I open my eyes—days filled with debilitating backaches, overwhelming fatigue, and relentless neck pain. My scoliosis adds an additional layer of discomfort that often feels like it’s twisting and prodding me from within.

Yet, despite these physical challenges, I hold steadfast to my spirit.

A groundbreaking collaboration

I find it difficult to articulate the excitement of a recent project that combined my passion for art with a mission to uplift others facing similar adversities.

Imagine overcoming the barriers posed by neurodegenerative conditions, channelling artistic skills into meaningful creations, all while inspiring those on parallel journeys. This endeavour took shape as an event with a compelling corporate social responsibility (CSR) mission, aimed at raising funds for vital projects. Together with Branden, a teenager also living with spinal muscular atrophy, we sold the artworks we created.

Legends signed my painting

I must confess, I’m not an avid football fan—nor do I follow the sport closely. However, learning that football (soccer) legends Teddy Sheringham and John Arne Riise had signed my painting sent me into a whirl of disbelief and excitement. Can you imagine? I still can’t fully wrap my head around it!

The joy of getting the legends to sign my artwork certainly wasn’t easy, but it was a collective effort. The support I received from the team made the experience unforgettable.

From painting to the field

The day before the match was the first day of the advocacy event. I was invited to an exclusive meet-and-greet with the fans and the football players themselves. Standing in the same room as legends like Wes Brown, Luis Gracia, Danny Webber, John Arne Riise, and Teddy Sheringham was surreal—this was a part of football history I’d only ever seen on screen.

Match day arrived with a mix of excitement and anticipation. Donning my Liverpool jersey, I felt a rush of adrenaline as I wheeled into the stadium for my first live football match. It was a tick off my bucket list that I had been looking forward to for so long.

As I entered the national stadium, I was enveloped in a sea of red, surrounded by passionate Liverpool fans, including myself. The atmosphere was electric as I prepared to witness the long-awaited clash between Manchester United and Liverpool in what was hailed as the "Battle of the Reds." The excitement reached its peak when Liverpool triumphed with a memorable scoreline of four to two—what a glorious victory!

Perspective from the field

It was awe-inspiring to finally stand in our national stadium, which felt much larger in person than I had imagined. The thrill of seeing English Premier League legends perform live was almost overwhelming.

However, I faced a bittersweet moment when I realized there was no designated wheelchair-accessible area. While I tried to enjoy the game, my view was obstructed by a barrier in front of me, so I had no choice but to lean closer to catch a glimpse over it.

Despite this limitation, the joy of watching Liverpool claim victory made everything worthwhile. The electrifying energy in the stadium served as a beautiful reminder of the thrill that comes from sharing passions with others.

Who could have predicted that my advocacy journey from creating art to experiencing the exhilaration of live football—would intertwine so beautifully?