A family spread across four continents have launched the global #Match4Lara appeal to save the life of 24-year-old London student and charity campaigner
A passionate advocate for a fairer world, young Lara Casalotti’s life is now being threatened by her own diverse heritage.
Lara has always embraced diversity – she speaks five languages, studies global migration, volunteers with at-risk youth and marginalised groups, and has worked at the UN and Human Rights Watch.
Lara has acute myeloid leukaemia and needs a lifesaving bone marrow transplant. But being mixed race - half Thai and half Italian - means finding a bone marrow donor is extremely difficult, and her only brother was told last week that he is not a match.
Only 0.5% of people on the Anthony Nolan register in the UK are from East Asian backgrounds and 1.5% are from European backgrounds, and the shortage of ethnic minority donors is mirrored across the worldwide registers. This means that only 20% of people from BAME backgrounds who need a stem cell transplant will find a perfect match.
Lara’s family, who live in Hampstead, London, have now started an international campaign to not only find a match for Lara, but to make the world a fairer place for other mixed race, Asian or black blood cancer patients in desperate need of a donor.
In early December, Lara thought she’d pulled a muscle in her back, and was getting a bit out of breath on short runs.
Not realising anything was seriously wrong, she flew out to Thailand where she was working with a professor from Oxford on conditions for domestic migrant workers.
“While she was there the pain she’d been having down one side of her body suddenly switched to the other side. That’s when she started to get worried,” remembers Seb. “Our aunt, who lives in Thailand, insisted Lara saw a doctor. She was given a blood test and, to everyone’s immense shock, discovered she had leukaemia.
“We flew out to see her straight away and then all came home together a few days later. We spent Christmas in hospital as a family.”
Lara, who is being treated at London’s University College Hospital, was put on a combination of three chemotherapies and told she needed a stem cell transplant. But first she must find a donor.
Seb said: “Strangely, I’d joined the Anthony Nolan register just a few months before at a donor recruitment drive at my college. At the time, it just felt like a no-brainer; I spat into a tube and that was that, not realising that a few months later my sister’s life would depend on other people doing the same thing.
“I remember being told by the volunteers that people from mixed race and ethnic minority backgrounds were underrepresented on the register. So when we were told that Lara needed a donor, I knew that she’d find it harder to find a match due to our diverse background.
“But I was shocked to find out there was only a one in four chance of me, as her brother, being a match for Lara.
“It’s ironic because I think most people would say they’d donate stem cells for a loved one, but wouldn’t do it just for any old person. But more often than not, you can’t actually help your family – so we’ve got to think as a community.
“Everyone needs to sign up to Anthony Nolan and help someone else. There’s no room for the attitude of only helping your own, otherwise most people would never find a donor.”
Despite hoping for the best, Seb was told this week that he was not a match, so the blood cancer charity Anthony Nolan is now searching the world’s combined registries for someone whose tissue type matches Lara’s.
Ann O’Leary, Head of Register Development at Anthony Nolan, said: “Lara is a truly inspirational and selfless young woman, and somewhere out there, there’s a potential lifesaver who could give her a lifeline by donating their stem cells.
“What many people don’t realise is how easy it is to join the Anthony Nolan register – it simply involves filling in a form and providing a saliva sample. If you’re one of the privileged few who goes onto donate, 90% of the time this will now take place via an outpatient appointment which is similar to donating blood.”
Lara needs to have a transplant soon, so the family have started an urgent appeal to boost donor sign-ups worldwide.
“We have a big bunch of 11 cousins, living all over the world, from America to Thailand and Tanzania, and we’re all very close – but it’s Lara who is the glue that keeps everyone together, making sure we all stay in touch regularly,” said Seb.
“Now all the cousins are springing into action to start a global campaign for Lara. We’re all pitching in, wherever we are in the world - from building a website to contacting universities.
“We’re doing big pushes in America and Thailand, as well as the UK, to bust the myth that donation is painful and get more people signing up.
“It’s all a bit embarrassing for Lara as she’s very humble and hates being the centre of attention; she hardly even uses social media apart from posting about refugee issues. But she knows how important this is, and what a difference it could make for anyone who is mixed race and looking for a donor.”
Seb added an urgent message: “Anyone joining the register is obviously great at any time. It takes time for the labs to test your tissue type and add you to the register. There’s no time to put this off or think ‘I’ll do it next week’. That could be too late for Lara. Please do it today.”