On most mornings, Joshua van der Merwe (8) wakes before the sun has properly settled over the rooftops in Pretoria east. His mother listens for the resounding alarm of the oxygen monitor before she even opens her eyes. The device tracks his oxygen levels through the night, a sentinel against the seizures that can steal his breath without warning.

In another part of Pretoria east, 10-year-old Shelby Heunes, begins her day more slowly, her movements deliberate as she steadies herself against the wall before taking her first steps.

Their lives are shaped by rare neurological illnesses that most people will never hear about.

Joshua lives with autoimmune encephalitis, while Shelby has Rett syndrome.

Their stories, filled with both fragility and resilience, became the reason Rooted Projects SA chose to dedicate this year’s charity golf day to them.

“Rooted Projects SA was established with the goal of empowering children with special needs by supporting communication, literacy and independence,” says Tanita van der Merwe, spokesperson for the organisation.

“Over time, we realised that many families of children with complex and rare conditions also face significant medical and therapy costs, often without adequate support.”

For Joshua, the illness affects almost every aspect of daily life.

Autoimmune encephalitis causes inflammation in the brain, disrupting development and triggering severe epilepsy. His seizures can escalate without warning and sometimes cause him to stop breathing.

Shelby’s condition, Rett syndrome, is equally demanding.

A rare genetic neurological disorder, it affects her ability to communicate, control her movements and maintain balance. Shelby relies on the careful guidance of those around her to navigate even familiar spaces.

Both children are non-verbal and require constant supervision. They can walk, but they do not fully understand danger.

“Both Joshua and Shelby live with complex neurological conditions that require ongoing care and specialised therapy,” Van der Merwe explains.

“Their daily care includes regular speech therapy, occupational therapy, physiotherapy, specialised medical consultations, and assistive communication support, along with the cost of medical equipment and caregiving.”

Shelby is admitted to hospital one weekend every month for specialised treatment.

Joshua’s care requires oxygen support and constant monitoring equipment, in addition to medications and therapy.

Both children attend specialised needs schools and rely on full-time caregivers. Medical aid covers only part of the cost, leaving their families to bridge the gap month after month.

“This year’s charity golf day was organised specifically to assist these two brave children,” says Van der Merwe. “Their stories are incredibly close to our hearts, and their resilience inspired us to dedicate this year’s event to helping them access the care and therapies they need.”

Founded to support children with special needs in developing communication and independence, Rooted Projects SA works closely with families who often find themselves isolated by circumstances they did not choose.

“Many families caring for children or adults with severe disabilities become increasingly isolated, not by choice, but because everyday environments are simply not designed to accommodate their needs,” Van der Merwe says.

“Something as simple as going to a shopping centre can become overwhelming or even impossible when there are no appropriate facilities.”

Despite their challenges, both Joshua and Shelby have achieved milestones that their families celebrate with a depth of gratitude that outsiders might struggle to understand.

Joshua had to relearn how to walk after a severe regression.

Shelby continues to practise maintaining her balance, each steady step a small triumph over a condition that constantly works against her.

Moments that might seem ordinary to others carry immense meaning in their homes.

Joshua spent three years on a strict ketogenic diet to manage his seizures. When the diet eventually lost its effectiveness and he transitioned back to normal food, simple meals became moments of celebration.

“Today, even something as simple as eating spaghetti becomes a special moment. The way he reaches out and takes your hand when you’re feeding him too slowly is truly heart-melting,” Van der Merwe says.

For Shelby’s family, a moment of sustained eye contact or a small response to a familiar voice can be enough to transform an entire day.

Van der Merwe explains these fragments of progress are reminders that development does not follow a single predictable path and that hope often resides in the smallest gestures.

Community support, she added, is the foundation that makes initiatives like this possible. Rare diseases often receive little public attention, leaving families to navigate complex medical systems and financial pressures largely on their own.

For Joshua and Shelby, that sense of being seen and supported extends beyond financial relief.

It means their stories are told, their challenges acknowledged and their progress celebrated by people who may never meet them but who choose to care nonetheless.

Rooted Projects SA, a registered Non-Profit Company (NPC), will be hosting a Charity Golf Day on March 26at Woodhill Golf Estate in Pretoria. For more information, contact Tanita van der Merwe on heartbeat@rootedsa.co.za.

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