Our Inspiration

The South African support group for families affected by Fanconi Anemia has seen the recent loss of two young girls. Both of them on the waiting list for a potentially lifesaving transplant. As with many others, matches could not be found in time. Through this, we’ve learnt that ethnic diversity on the registry is critical in order to give EVERYONE diagnosed with a rare blood disease a fighting chance.

The global stem cell donor recruitment expedition was inspired by our own experiences with Fanconi Anemia, a stem cell transplant and the hopes of paying it forward to others in similar circumstances, all over the world. Every single person that we sign up, could potentially be the ONE chance that someone needs to live their life!

In FA, the greater percentage of children and adults will at some point in their lives need to undergo the truly challenging procedure of a stem cell/bone marrow transplantation. This is also the case for more than 70 other rare blood diseases such as Leukemia. The stem cell registry is made up of willing individuals that sign up to be matched as donors. The chances of being someone’s match is 1 – 100,000. If found to be someone’s life saving match – the donation process is non-invasive, and can be compared to a blood donation. The costs are covered, being on the registry is free of charge and signing up only requires three mouth swabs. We’ll be there to sign them up!

How do we plan on doing this?

We have partnered up with the South African Bone Marrow Registry. They are essential to our mission and provide us with logistical support, donor drive kits, equipment, marketing material and has also assisting us in acquiring used vegetable oil and arranging future donor recruitment drives at venues and events on our route. They have the necessary resources to arrange biological import and export documentation for the stem cell donor kits. Without this crucial link, our journey would be in vain.

Our Truck

To make all of the above possible, we needed a reliable vehicle that would toughen out the worst conditions and roads in Africa. We would have to be able to make mechanical repairs next to the road, and most importantly we would have to be able to afford it. By chance we came across an old retired fire department rescue vehicle – a 1995 Mercedes 1517 4×4, and we instantly knew she was “The One”. We named her Betsy.

10 Years | 3 Continents | 64 Countries

South Africa to Vietnam

Planning the “Matches on the Map” expedition has taken up hundreds of hours of researching possible routes, locations, border crossings and safety concerns. We intend to host the first recruitment events in our home town – Nelspruit, Mpumalanga, South Africa before setting off towards the Kingdom of Eswatini (formerly known as Swaziland). Eswatini is a landlocked country, and will be the first border we cross. Our aim is to do at least one donor recruitment drive in each country, but some (such as South Africa) will offer us many opportunities to host such drives. During our first year we aim to visit the FA families in our network and to connect them with other FA families in South Africa and our neighboring countries such as Zimbabwe. Ultimately building a FA community in South Africa (and hopefully beyond) where families are motivated to support, collaborate and share resources with each other and neighboring countries.

Creating awareness about Fanconi Anemia:

Fanconi anemia (FA) is an inherited DNA-repair disease that may lead to bone marrow failure (aplastic anemia), leukemia, and/or solid tumors.

FA can affect all systems of the body. The types and severity of symptoms can differ widely from person to person. FA patients have an extremely high risk of developing squamous cell cancers in areas of the body in which cells normally reproduce rapidly, such as the oral cavity, vulva, esophagus, gastrointestinal tract, and anus. The incidence of head and neck cancer is 500-700 times greater in individuals with FA compared to the general population. In addition, FA patients develop these cancers at a much earlier age than people without Fanconi anemia. Patients who have had a successful bone marrow transplant and, thus, are cured of the blood problems associated with FA, are still at extremely high risk for these cancers. Regular screenings are critically important.

FA occurs equally in males and females. It is found in all ethnic groups. Research has added years to the lives of people with FA. Decades ago, children rarely survived to adulthood. Now, there are adults with FA that live into their 30s, 40s, and beyond. In late 2017, for the first time ever, there were more adults living with Fanconi anemia than children (according to FARF’s registry). This reflects an emerging population of adults that was not present even just a decade ago. This growth in the adult population could be attributed to the dramatic increase in survival following stem cell transplants over the last 20 years. As a result, more children are reaching adulthood.

For more information, guidance or if you would like to contribute towards much needed research please visit: www.fanconi.org

Our Income 

We have a range of handcrafted products that we sell at various local artisanal markets. The handmade nature of our products allow us to work from the truck while living on the road full-time.