Couple on decade-long drive to sign up stem-cell donors
Mbombela couple Robin and Jolandie Lewis have parked their 11-tonne truck Betsy at Areena Riverside Resort, sorting out her cooking oil-fed engine before continuing their planned decade-long “Matches on the Map” drive across the globe.
Partnered with the SA Bone Marrow Registry, the couple, 31 and 30, set off in September 2023 as Numinous Expeditions to sign up stem-cell donors across Africa, Asia and Europe.
Their next recruitment drive is at the Fine & Fabulous market at the Beacon Bay Country Club in East London on Saturday.
Already 454 new donors have signed up and they cannot wait for their first match.
Their route so far has taken them through Swaziland, Lesotho and parts of SA.
Their next stopover is Hogsback, then it’s on to Gqeberha and along the Garden Route to Cape Town.
In 2017, Robin fell ill with aplastic anaemia a rare condition where the bone marrow no longer produces enough new blood cells.
This became a further diagnosis of leukaemia and then Fanconi anaemia, which causes cancer throughout one’s life.
“Because of the leukaemia I had to undergo a stem cell transplant, and it’s really difficult to find [stem cell] matches,” Robin said.
“You’ve got a 30% chance of a match in your immediate family and my only 50% match in the world was my sister.
“When they diagnosed me with Fanconi anaemia before the stem cell transplant they said that if I were to survive I would have a 10-year lifespan expectancy.”
He spent five months in isolation after the transplant and two years recovering.
During this period, working with Fanconi anaemia support groups, they saw the dire need for more donors.
“Ethnicity plays a major role in donors to patients.
“For example, a Caucasian donor has a one to 100,000 chance of being matched up to a patient while any other ethnicity has a one to 400,000 chance. It’s really slim.”
For this reason, Jolandie said they had planned their decadelong route through Africa, Europe and Asia to build up the diversity of the local bone marrow registry, an accredited member of the World Marrow Donor Association.
“The reason is that there are not enough people signed up.
“The more people who sign up the more people have chances.”
Donors have to be between 16 and 45, and if matched with a patient which is not guaranteed and can be years after signing up will be contacted. If all is agreed, they will have an expenses-paid trip to the nearest SA bone marrow donation centre.
“They will give you a stimulant that overproduces your stem cell production,” Robin said.
“They take blood from one arm and put it through a stem cell filtration machine, and put the blood back into the other arm. It’s similar to donating blood but more technologically advanced.”
There is no extraction of marrow from the bones, which used to be the practice; however the misconception remains.
This motivated them to put their retirement travel plan into action.
In 2020, they returned home to Mbombela and the carpenters began refitting Betsy from scratch.
“She was old, red and rusted, but we put our last funds into the truck, sold everything we had and brought the truck back to Mbombela,” he said.
Four years later, the 1995 Mercedes 1517 4x4 has a brand new interior, a roof of solar panels, compact gas stove, fridge, washing machine, a bathroom and sunset deck.
The vehicle holds up to 250 litres of used cooking oil, which can be a challenge to source.
“We knock on restaurant doors and fish and chip shops. Betsy is quite thirsty and goes at 3km a litre.
“We fund the whole trip ourselves, which wouldn’t be possible if we had to pay for diesel.”
The engine runs off diesel for 10 minutes to heat up the oil, running through a filtration system for the day’s driving.
To fund the operation, the entrepreneurs craft bespoke jewellery and eco-friendly, reusable beauty and kitchen items which will also be on sale at Saturday’s market.