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Three continents, 64 countries and an estimated 112 000 kilometres of driving, over the course of the next decade – that’s the journey a Nelspruit couple are embarking on to increase awareness of the importance of stem-cell donation.
Robin Lewis (30) and his wife, Jolandie (29), are starting their Matches on the Map drive in mid-August, a journey that will take them through South Africa, across Africa, Europe and Asia to sign up stem-cell donors, in partnership with the South African Bone Marrow Registry (SABMR), a non-profit organisation that helps patients in need of bone-marrow stem-cell transplants.
“We want to find stem-cell matches for people who don’t have matches, by getting a diverse spectrum of donors around the world,” Robin tells YOU.
“We want to spread awareness on how easy it is to be a stem-cell donor. Most people still think it’s a very difficult and painful procedure, like the olden days but now it’s easy and non-invasive,” Jolandie adds.
Robin and Jolandie ran a successful carpentry business for years, until Robin suddenly fell ill.
In 2018, he was diagnosed with bone-marrow failure, which caused leukaemia.
He was transferred to Groote Schuur Hospital in Cape Town for an urgent bone-marrow stem-cell transplant.
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Before the transplant procedure, he'd undergone last-minute tests and it was discovered that he had Fanconi anaemia (FA) – a rare genetic disorder that causes bone-marrow failure, leukaemia and other cancerous tumours.
“We were so glad they discovered the FA, because if they treated me the same way as someone who just has leukaemia I would have likely died, with the chemo dosage they were going to administer,” he says.
With the help of SABMR and his sister, who was his donor, Robin went on to have a haploidentical (partially matched) transplant.
This was the only matched donor available for him in the world and it gave him a second chance at life.
After four months in hospital, Robin was discharged.
“When I was discharged, I was given a 10-year life expectancy, so my wife and I thought, 'What could we do in the 10 years to give back?’” he recalls.
“We bought our truck, Betsy, in 2019 with the idea of driving through Africa to take on a spectrum of non-profit projects, but after being asked to be the leader of the support group for patients living with FA in South Africa, and doing a recruitment drive for two young girls that needed donors, we thought donor recruiting was our calling.”
And that was the start of Matches on the Map, which will take the couple from South Africa to Vietnam over the next decade.
Nadia Chalkley, the head of donor recruitment for the SABMR, says being part of Matches on the Map project was very important to debunk stigmas associated with stem-cell donation and to increase the numbers of donors of colour on the registry.
“Our database is dominated by Caucasian donors but we want to expand it especially for patients of colour. Only 35% of our donor base is of colour in the South African registry, which meets the worldwide standard in general, but it’s not a reflection of the demographic make-up of South Africa. This limits our ability to find matches for people of colour, hence we want to get more donors from African countries,” she says.
Robin and Jolandie started rebuilding Betsy and documenting their progress on their YouTube channel, Numinous Expeditions, so they could learn how to maintain and repair it on their adventure.
“We hand-built Betsy, on our own, over the past four years. Betsy is a house on wheels, and we even managed to convert it from running on diesel to running on used cooking oil,” Jolandie says.
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The couple plan to have at least one recruitment drive in every country they visit, especially at universities, to attract younger donors; at universities with medical faculties; and to educate medical students about FA. “While they are driving through these countries, we will supply them with donor-drive kits, marketing material and logistical support," Chalkley says.
Donors must be between the ages of 16 and 45.
How to become a donor:
1 Donor drive – visit the SA Bone Marrow Registry (SABMR) station, to physically sign up when they drive by your community.
2 Online registration – visit the SAMBR website (sabmr.co.za) to sign up online.
Even though they are excited, they are a little bit nervous about the journey ahead.
“We fear our truck breaking down beyond repair or being involved in an accident away from home,” Robin says.
“But fear can’t stop us, we are determined to do this. If signing up one person could be the one chance someone else needs to live, that's the faith we need that all will be well,” Jolandie says.
SOURCES: SAMBR.CO.ZA, MY.CLEVELANDCLINIC.ORG, MAYOCLINIC.ORG
