Cape Town - More than 70 runners will participate in the Totalsports Two Oceans Marathon (TTOM) this weekend to support 4-year-old living miracle Lukas van der Walt and the Little Lighthouse Foundation.
Lukas was born with LMNA, an extremely rare form of congenital muscular dystrophy which is a degenerative genetic disorder that destroys muscle tissue over time.
His is currently the only recorded case in South Africa.
His parents, Tjaart and Lize had struggled for eight years to fall pregnant.
At birth, Lukas could move his arms and legs, but now he only has movement of his feet and thumbs.
His diaphragm is also dysfunctional and his breathing is assisted by a ventilation machine, though a tracheal stoma.
Lize, who is a hairdresser, explains that Lukas’s mind is wide awake and he communicates very clearly when he enjoys himself and when he does not.
He loves being outdoors and doing activities with his parents, so they take him jogging, cycling, and walking the dog as much as they can in a special stroller that can also carry his life-giving machines.
“He wants to move, and he knows he cannot move, but if you can move, he can move. It almost becomes your responsibility to move because you can,” she said.
“We love Lukas just the way he is.
We accept him for who he is, and we would not want him any other way.”
When Covid-19 lockdown hit, a few months before Lukas’s birthday, both his parents struggled to work and relied on assistance from family and the community.
They started the Little Lighthouse Foundation to raise funds to look after their miracle boy and to shine a light on his very rare condition.
Peet Grundling is one of the TTOM participants who will run to assist Lukas.
Grundling will run for the boy’s new stroller and has already raised R35 000 of the R50 000 needed.
“I believe every person needs a chance in life, especially children, but not all have the privilege of being afforded that chance. As part of my ‘pay-it-forward’ belief, I decided to run the TTOM.
“Lukas is dependent on his medical machines that require 24-hour electrical power. The biggest challenge at this stage is to manage and cope with the load-shedding schedule that is currently happening in South Africa.
They do have an inverter with batteries, but it is not sufficient to maintain his machines for the duration of a four (or) six-hour load-shedding time slot, even if they are fully charged,” he said.
The Jacaranda FM Good Morning Angels Fund will also assist Lukas with a donation of R35 000 towards his stroller and other needs, while Kobus du Plooy from Rendev Property Group will assess the Van der Walts’ backup power solution and assist them with the best top-up solution to keep Lukas’s vital breathing equipment going during prolonged periods of load shedding and power interruptions.
For more information on Lukas and The Little Lighthouse Foundation, visit: https://www.facebook.
com/littlelighthousefoundation or https://www.facebook.com/ littlelighthousefoundation/videos/230221678318377/.
Cape Times