Nicole Liedemann-Telukram is walking from Johannesburg to Cape Town – one step at a time – to shine a light on her husband’s battle with a rare, debilitating illness.
The 37-year-old mother of seven began her 1,400 km trek fifteen days ago, determined to raise awareness and funds for Dercum’s Disease, a condition that has left her husband, Shaun (Sathish), in constant pain and unable to work.
Shaun’s struggle began in his teens when harmless-seeming lipomas (fatty lumps) appeared on his arms and legs.
Doctors dismissed them as benign, assuring him they’d cause no harm. But by his mid-30s, the lumps multiplied, causing paralysis, numbness and excruciating pain.
In 2021, after years of misdiagnoses, Shaun was diagnosed with Dercum’s Disease – a rare disorder affecting fewer than 200 000 recorded cases globally.
For Shaun, now 37, the disease has meant over 300 lipomas riddling his body, some as large as golf balls.
The hope that started a journey
After conducting more research into the rare disease, the couple discovered Dr Karen Herbst, an expert in Dercum’s Disease based in California.
In a video call, Dr Herbst explained that the condition is genetic, potentially affecting their children, and often worsened by trauma, with many cases only recently being recognised.
Dr Herbst promised her assistance in the effort to find a cure, but it would require costly genetic testing and a team of specialised doctors and scientists who would need funding.
And so the cause was born, as Nicole set the goal of raising R10 million in critical funding for her husband’s rare disease.
The fundraising mission would see the courageous wife and mom set off on a 1 400km journey along the N1 from Johannesburg to Cape Town.
@nicoletelukram♬ original sound – Nicole Liedemann
A 45-day journey along the N1
Accompanied by her best friend, Neo Paballo Mahao, who drives a safety vehicle, and their loyal boerboel co-pilot Zaza, the trio set out on a mission along SA’s major national road, determined to reach Cape Town in 45 days.
Nicole’s campaign, which aims to raise funds for Dercum’s Disease and awareness of rare diseases in SA, was launched on BackaBuddy as she hit the road for her hubby.
Two weeks into her journey, she has already conquered blisters and flu, and the trio have endured freezing Free State nights.
With the help of friendly faces along the way, they have been humbled by SA’s kindness. Strangers have offered guesthouse stays and home-cooked meals, and support.
“We’ve been bawling, I think, every two days so far just at the helpfulness and the generosity of strangers,” Nicole said as per News24.
The trio’s TikTok updates (@nicoletelukram) document the journey’s highs and lows, along with the friendly faces they’ve met along the way.
@nicoletelukram♬ original sound – Nicole Liedemann
Nicole is set to reach Cape Town in June
After fifteen days of being on the road, Nicole has passed the halfway mark on her walk to raise awareness.
Trailed by her crew, Nicole has conquered the road from Jozi to Colesburg. Now she maker her way to Hanover, Beaufort West and finally, Cape Town in 782km.
Despite offers for new walking gear, Nicole prefers that donations go directly towards supporting the cause for Dercum’s Disease.
“We’re still looking for donations towards the journey, like accommodation. But if any company would like to sponsor, do not sponsor me with clothes and shoes. Rather donate to the cause,” she tells News24.
“I don’t need a fancy pair of takkies for walking, because I don’t plan to walk again,” she joked.
Every step brings hope to Shaun, their children, and thousands silently battling Dercum’s Disease.
As Nicole walks, she carries a universal truth: love can move mountains – or, in her case, cross a country.
First published by Cape {town} etc
Compiled by Tauhira Ajam
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