This weekend marks the commencement of the Totalsport Two Oceans Marathon, an eagerly anticipated event that will see 14 000 runners embark on the challenging journey from Newlands Main Road to the UCT rugby fields.
Also read: Road closures for Two Oceans Marathon on Saturday and Sunday
Among those 14 000 runners, 70 of them will be running for The Little Lighthouse Foundation, a foundation inspired by Lukas van der Walt, who was diagnosed with the very rare disease LMNA-CMD, more commonly known as congenital muscular dystrophy.
Cape {town} Etc had the opportunity to speak with Tjaart van der Walt, the father of Lukas, who provided insights into Lukas’s story and the core mission of the foundation.
Lukas was born on 10 June 2019, but concerns arose swiftly after his birth when medical professionals detected irregularities in his breathing. After an exhaustive period of three months, Lukas received a diagnosis of LMNA-CMD. Consequently, he relied on a home ventilator to aid his breathing.
As time passed, it became evident that LMNA-CMD, a progressive condition, posed significant challenges for Lukas. As he grew older, the disease rendered him increasingly immobile and compromised his ability to breathe independently.
Tjaart revealed to us the staggering financial burden associated with Lukas’s condition. It was this realisation that prompted them to establish the foundation, recognising the pressing need to provide support and alleviate the overwhelming costs associated with the disease.
‘We realised that the medical costs that comes with this is super expensive. When we wanted to get him his first stroller, it was basically R70 000 just for the stroller. We decided to start the foundation in order to assist with funding on his medical equipment.’
The name of The Little Lighthouse Foundation isn’t merely arbitrary but rather holds a special significance.
Tjaart said, ‘Lukas means light and before he was born my wife, Lize, had a tea party and the whole theme of that party was lighthouses. The room that we started getting ready for him before he was born was also lighthouse themed. A lighthouse is something that brings hope to others and guides ships to places and that’s basically how we came up with the name.’
Despite being bound to a ventilator and stroller, Lukas found his greatest joy in the outdoors, basking in the warmth of the sun.
‘Every time we started moving himself outside in his stroller, his face would light up. That’s when we realised we have a responsibility to not let him live a life that is bound to the house or hospital.
‘We would take him on hikes to Table Mountain Nature Reserve, we took him to the Aquarium and on boats,’ Tjaart explained.
Tjaart emphasises that while the foundation’s inception was inspired by Lukas, its purpose extends far beyond him.
‘Our goal for the foundation was to assist other families with mobility disabilities with strollers, bath chairs, seating chairs, any mobility equipment that could help them in any way.’
This year’s Two Oceans Marathon marks a shift in focus for The Little Lighthouse Foundation, as they extend their support to Wessel Ritter, a 12-year-old grappling with vanishing white matter disease. This condition leads to the dissolution of the brain’s white matter, resulting in an inability to move.
‘His immediate need is a hoist, a seating chair and a feeding pump. All of this equipment will cost in the region of R100 000,’ Tjaart said.
The foundation has launched a BackaBuddy campaign titled ‘Hope for Wessel,’ providing a platform for those willing to contribute to do so through the BackaBuddy website.
The Little Lighthouse Foundation is gearing towards establishing a repository of equipment, aiming to distribute it to children in need and redistribute surplus equipment that other children no longer require.
This upcoming Two Oceans Marathon will mark the foundation’s third participation, with Lukas achieving a significant milestone by completing his inaugural race alongside his mother, Lize. Lukas joined her for the final 5km stretch of the half marathon, symbolising a remarkable moment of resilience and determination.
Leanne Dippenaar, a close friend of Tjaart and Lize van der Walt, expressed profound sentiment towards The Little Lighthouse Foundation. She highlighted how witnessing the couple’s daily and weekly struggles deeply resonated with her, underscoring the foundation’s significance in addressing such challenges.
‘Being able to run and cycle for this foundation in order to help them (Tjaart and Lize) and help children with similar genetic disorders touches me deeply because the foundation is trying to make a difference in people’s lives when sometimes all hope seems lost.’
‘Knowing that you are doing good for others and moving for those who can’t is a bit of an indescribable feeling because we often take it for granted that we are able to walk and cycle on a daily basis when there are so many people who can’t do that,’ Dippenaar concluded.
To support the BackaBuddy ‘Hope for Wessel’ campaign, visit backabuddy.co.za.
You can also reach out to The Little Lighthouse Foundation through Facebook, Instagram, or their website for further enquiries or to offer support.
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Picture: Supplied