WATCH | A 4-year-old boy with a rare disease inspires over 70 volunteers to compete in Two Oceans

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  • More than 70 volunteers will compete in Cape Town's Two Oceans half-marathon to raise awareness around congenital muscular dystrophy.
  • Their participation was inspired by a four-year-old boy diagnosed with a rare form of the disease.
  • "It gives you gratitude," said one of the volunteers, who, like most of the participants joining the cause, is a first-time runner.
  • GOOD NEWS DAY IS BACK! News24 celebrates the people restoring pride in our country. Read their stories here

A four-year-old Cape Town boy diagnosed with a rare form of muscular dystrophy has inspired a group of volunteers to compete in this year's Two Oceans half-marathon.

They intend to raise awareness around the incurable disease by moving for the sufferers who cannot.

"On this journey, we realised that quantity is not something that we have but that we have to aim for quality," said Tjaart van der Walt on the time spent with his son, Lukas.

"When he is happy, we are happy, and that's what every parent wants for their child."

This quality time consists of family outings to Melkbos Beach, cycling, and running, the activities that bring a smile to Lukas' face, even though he is physically unable to move.

Lukas suffers from an extremely rare form of congenital muscular dystrophy (CMD) caused by mutations in the LMNA gene responsible for the production of certain proteins.

Around 100 cases of congenital muscular dystrophy due to LMNA (L-CMD) have been reported in medical literature, according to Orphanet, a knowledge base dedicated to rare diseases led by the French National Institute of Health and Medical Research.

Degenerative disease

Like all other forms of muscular dystrophy, L-CMD causes progressive weakness and loss of muscle mass but at a more rapid rate, with the degenerative nature of the disease affecting both the lungs and heart during early childhood.

At birth, Lukas had full movement of his arms and legs. Four years later, he can only move his feet and thumbs, requiring permanent oxygen ventilation through a tracheal stoma due to the dysfunction of the diaphragm muscle responsible for breathing.

Elizabeth van der Walt, Lukas' mother said:

He needs 24/7 care. There are some moments where you can leave him alone to watch TV, but you can never go too far because anything can happen.

In addition to constant oxygen ventilation, which is further complicated during higher levels of load shedding, Lukas also relies on a host of other specialised equipment to keep him alive and comfortable.

Because he cannot swallow, a suction machine is used to prevent saliva build-up and asphyxiation, while food is administered through a feeding tube attached directly to his stomach.

Despite Lukas' inability to move independently and the challenge of being tied to machines for his survival, the four-year-old's parents said he enjoyed nothing more than being outdoors and involved in the family's physical activities.

READ | 'My wife can never doubt I love her': Cape Town husband to walk 600km to raise funds to clear student debt

"He makes me feel content when I look at him because he doesn't get bothered by major things. If he can be outside on a nice day when it's sunny and there's no wind, he can just be there outside all day," added Elizabeth.

"If you look into his eyes, you can see that it gives him great pleasure for you to move, and I think that's why he loves it when we take him on a run.

"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."

Running for those who cannot

The concept of moving for those who cannot - because of muscular dystrophy - has become the mantra of the foundation started by Elizabeth and Tjaart.

The Little Lighthouse Foundation, created at the end of 2019, is on a mission to create awareness around CMD in South Africa while encouraging research, support, and treatment.

The foundation aims to do this by enlisting volunteers to participate in high-profile, public sporting events, like the Cape Town Cycle Tour and Two Oceans Marathon, under the Little Lighthouse banner.

These participants also form part of the foundation's fundraising efforts through numerous BackaBuddy campaigns.

Elizabeth said: 

About 90% of the volunteers who are doing the Two Oceans with us [this year] are first-timers and, to us, that's beautiful to see because that's part of our mission and part of our vision.

The number of volunteers for this year's race had grown to more than 70, whereas just four participated in 2022.

"These people moved outside of their comfort zones for a little boy, not even knowing that they're also moving forward for themselves."

One of these first-time runners looking to complete the 21km half-marathon in April is a friend of the Van der Walt family, Anna Solomon, who said the thought of Lukas had helped her push through the difficulties during her preparations for the Two Oceans.

"I don't come from a running background [but] with any of life's challenges or difficulties you're facing, you have to have your 'why' that gives you your reason for doing something. Lukas and the Little Lighthouse Foundation is definitely that 'why'," added Solomon.

"When you're running, and your legs are tired, or you can't breathe, you put it into perspective … the little guy that really wants to be up and running and might be struggling to breathe that day. It gives you gratitude."

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