Johannesburg - Mpumalanga residents, Robin and Jolandie Lewis, are planning to boldly go where no couple has gone before and are aiming to become the first two people in the world to embark on a 3-continent adventure for stem cell donation awareness.
The pair will embark on a 10-year, 64-country journey to spread global awareness around the importance of stem cell donation. They will start their “Matches on the Map” journey from their hometown, Nelspruit in August, and will be travelling an estimated 110 000 kilometres through Africa, Europe, and Asia in their one-of-a-kind custom-built motorhome affectionately known as “Betsy”.
The vehicle is an old fire truck that has been converted to run on used cooking oil to be more sustainable and save on diesel costs. The duo were inspired to take on this project, following a successful stem cell transplant, after Robin was diagnosed with Fanconi Anemia – a genetic DNA repair disorder that may lead to bone marrow failure, leukaemia and or solid cancerous tumours.
The chance of finding a matching donor is like finding a needle in a haystack, given the number of donors registered world-wide, but Robin went on to have a haploidentical (partially matched) transplant. This was the only matched donor available for Robin in the world.
Robin said he hopes that they can help patients who find themselves in a similar situation. Their objective is to sign up thousands of donors in partnership with the South African Bone Marrow Registry (SABMR), as they journey through each continent, starting in Africa.
“If it wasn’t for the stem cell transplant, I would not be here today. Since then, we’ve been plotting ideas of how to raise greater public awareness around stem cell donation, and that’s how ‘Matches on the Map’ was born,” he said.
The aim is to add diversity not only to the SABMR, but also to registry databases in countries they will be travelling to, with the goal of finding matches for patients en route. Lewis says planning the expedition took hundreds of hours of research, looking at routes, locations, border crossings and safety concerns. This while at the same time building Betsy, which has taken up the most part of four years.
“After my transplant five years ago, my wife and I started planning the trip with the hope of changing the world. Our plan was very ambitious, and we soon realised that we couldn’t do it alone. As Fanconi Anemia nearly claimed my life, we decided that we would also focus on establishing support groups for patients with this disease, as we make our way through various countries, meeting up with families that are affected, and sharing their stories,” he added.
“Building the truck has taken us four years and we can’t wait to get on the road with Betsy and officially get the ‘Matches on the Map’ project underway. We’re very grateful for the SABMR, who will be assisting us with stem cell donor kits, documentation, export and import logistics, marketing efforts and support every step of the way. They’ve been 100% behind us since day one,” said Yolandie.
Head of Donor Recruitment for the SABMR, Nadia Chalkley, said “Matches on the Map” will allow access to a broad and much more diverse spectrum of donors.
“Ethnicity plays a huge role in finding donor matches, especially for patients of colour. Currently, only 35% of our donor base is of colour, which is not reflective of the demographic make-up of South Africa. This limits our ability to find matches for patients who are of African or Indian descent.”
Chalkes said SA has 78 000 stem cell donors on its database, but every year some donors become ineligible and more people are encouraged to register.
“While we are making progress through our in-person community drives across the country and online donor registrations, we need to consistently educate and sign up donors to give all patients a fighting chance. This project will bring us closer to making our donor database more diverse. The more donors we have from various ethnic backgrounds, the greater the chances of a match,” she said.
Meanwhile, Robin said there is still much work that is required before Betsy takes off on her maiden voyage.
“We still have a way to go before Betsy gets on the road, but we are confident that we will have her completed in time. We are launching a crowdfunding campaign via Backabuddy in collaboration with the SABMR, to assist us with ongoing operational costs on the road and to raise additional funds for the Registry’s donor recruitment efforts, as stem cell kits and the processing thereof is quite expensive.”
The couple sold their business and everything they had to make this special journey to save lives, possible.
“We want to appeal to corporates and the public to come on board and help us fulfil this dream of making a meaningful change in the lives of patients who require a stem cell transplant. The likelihood of people from certain ethnic backgrounds finding a successful match is a mere 37% compared to patients from European descent whose chances are 72%. As a survivor myself, I know what a harrowing experience it is to have to wait for a donor match when you’re running out of time,” Robin said.
Local celebrity and stem cell donation ambassador, Siv Ngesi has encouraged black South Africans to get on board, saying matches are often found within your own race.
“It is painless and it is important. Many people are scared to donate, but anyone who is in good health and between the ages of 17 and 55 can become donors,” he said.
Ngesi said every 27 seconds someone in SA is diagnosed with a blood disorder and only 0.04% of South Africans are registered bone marrow donors.
To donate to this worthy cause, visit Backabuddy.co.za
The team is hoping to raise at least R150 000 and the “Matches on the Map” journey, can be followed on https://numinousexpeditions.co.za/ as well as the SABMR and Numinous Expeditions’ social media platforms: @sabonemreg on Facebook, twitter, and Instagram and @numinousE on Facebook and @numinous_expeditions on Instagram. The journey will also be film documented to share with the world on the YouTube channel - https://www.youtube.com/@NuminousExpeditions
If you would like to become a donor, contact the SABMR on 021 447 8638 or email: [email protected]. Financial donations can also be made via www.sabmr.co.za/donate.