In 2013, Yaser Martini and his wife, Vicki, were told that their 14 month-old daughter, Margot, had leukaemia and required a bone marrow transplant (also known as a stem cell transplant) to stand the best chance of survival.
Family & friends came together as Team Margot, to encourage people to be screened as potential bone marrow donors for Margot and others in need of a transplant. Team Margot added tens of thousands of new potential donors to the UK registers, but sadly, although a “suitable match” was eventually found for Margot, she died in October 2014 a few months after her transplant, at the age of 2 years and 2 months. Team Margot continues to campaign for more people to join the registers as potential stem cell and bone marrow donors.
We felt helpless – campaigning as Team Margot was something we could do. If our efforts didn’t help Margot, then at least they would help others in need. Vicki felt very strongly about this. And whilst we recognised that the chances of us finding Margot her perfect match were extremely slim, we nevertheless felt that a slim chance was better than ‘no chance’. So we put together an appeal video and went from there.
Don’t be afraid to copy what works. Frankly, we adopted the same video format and text that had struck a chord with the community on the Isle of Wight, and which had resulted in a very successful donor drive. I studied that video and then more or less copied it, changing the music (which Vicki chose) and swapping the images, to make it Margot’s story. It’s now been seen over 120,000 times on YouTube. That video was key to helping us kick start Margot’s appeal. It had the core message and a call to action, it was emotional and it was easy for people to share.
You need trusted lieutenants and a wider team of people who are willing to help. It’s about being clear and consistent on what you are trying to achieve and when people offer to help, spotting the relevant opportunity and knowing how to channel them. It was my sister, Nadia, who really spearheaded all the ground work and organisation involved with running donor registration events. That was very important because it removed a lot of noise and clutter from our lives and enabled us to focus on Margot and to be more strategic about her appeal.
People come to you out of the blue. A lady got in touch via Facebook and said, “I’d like to run a donor drive,” and she ran a very successful one in Notting Hill. I met someone who said, “Oh, I’ve got a friend at ITV you could talk to”. That person came to meet us at the hospital with a film crew and then broadcast a wonderful awareness piece about Margot, with a call to action. Someone I know owned a business with more than a quarter of a million email addresses; he sent information about Margot and a link to her appeal video out to his database. Another friendly company with half a million email addresses did the same to their network. And so on. All in all, I think that appeal video went out to around 1.3 million people within the first week.
We hadn’t really thought about what success might look like, we just went full steam ahead. At the end of the first week of Margot’s appeal going live, the lady from Delete Blood Cancer UK (now DKMS UK) rang me up and said, “We’ve had a spike in registrations.” I said, “Oh good. How many have you had?” And she replied, “Well, we’ve had 12,000 of them in the last 10 days.” I asked, “Is that good?” And she said, “Well, we’re used to getting between 20-30 a day.” That was the first real indicator for us that what we were doing was actually working and getting cut through.
Charities aren’t necessarily for the greater good. This was a surprise to us. Because initially, we naively went into it bright-eyed, bushy-tailed sort of thing, believing that all charities do really good stuff and that they all want the same thing. What we quickly learned is that you get good charities and not so good charities. And what charities do is sometimes partisan, a bit counter-intuitive and not necessarily for the greater good.
We found that Margot’s story resonates with kids. So, our hunch is: if you can reach out to to children of primary school ages, before their minds become cemented and just make them conscious of how giving stem cells and bone marrow, blood and platelets, organs and cord blood, can help save a life, then two things will probably happen. Firstly, there will be a greater chance that those children become donors when they reach the legal age of consent and secondly, in the more immediate future, we might see positive behavioural changes within their families and from their loved ones, and the resultant increase in adult donor registrations. So that’s the hope.
“Even now I’m still prone to suddenly welling up and when I least expect it.”
People often say “time heals”. It doesn’t. I think it simply helps give you better coping strategies. Over time, you’re more able to deal with your own personal situation and manage it a bit better, but even now I’m still prone to suddenly welling up and when I least expect it. Margot’s death also affects our boys (now aged 10 & 8) and of course Vicki; each of them deal with it in their own way. Personally, I’ve never known anything like it before. I’m still totally floored by what’s happened. As I know we all are. So you just soldier on, really. You get on.
Cause & Effect is a series from Hope, in which leading figures who have been involved in building and promoting good causes tell us what they’ve learned from their experiences. Interview by Michael Isaacs.