'He's never met them – but one couple could save Devan's life'

Until his nephew fell ill with leukaemia, Clifford Coonan knew little about cord blood and bone marrow donation. Now he urges us all to become more aware

It's the kind of phone call parents have nightmares about. On Friday 30 April, Dermot Tatlow dropped his wife Indira Lakshmanan off at the State Department in Washington DC, which she covers for the Bloomberg news agency, when his mobile phone rang. The couple's four-year-old son Devan's quarterly biopsy two days earlier had come back positive, and his leukaemia had returned. He pulled over. This phone call for this family was particularly cruel, as Devan had been outside the period of recovery from cancer called maintenance for over a year. They thought – everyone thought, and as Devan's proud uncle, I shared this hope – that he was well, that the bad times were past.

Nearly three years ago, Devan was 18 months old and on the plane to Hong Kong to begin a new chapter in his young life when the doctors diagnosed little Devan with acute promyelocytic leukaemia. After a tough period of chemotherapy, it appeared he was fine.

"We thought we'd dodged that bullet. We thought life had gone back to normal. Then came the call. I had to get Devan out of school and down to the clinic," said his dad, a photojournalist, on the phone from Washington.

Now it was back again, a shockingly cruel turn of events. The doctors held a conference on the following Tuesday at which they decided that Devan would have five weeks of chemotherapy, using arsenic trioxide mostly, combined with a treatment called ATRA. Then he would have two weeks' rest, then another five weeks of treatment, after which he should go into remission.

Devan needs a bone marrow transplant or an umbilical cord blood match to help save his life. Genes from Poland, India, Sweden, Ireland, England and Germany all feature in his ethnic make-up, but the same mixed ancestry which makes him such a handsome lad has also made his situation very complicated and has limited his chances of finding a bone marrow match to around one in 200,000.

His situation is very serious, but there is hope. A potential cord blood match has been found, believed to be from a couple in Spain or Korea, and although it is not a perfect six-out-of-six match, the marker the doctors normally use, doctors believe it will be enough for him to have an operation, once he goes into remission after a lengthy period of chemotherapy.

But there is still no match for him in the global adult stem cell/bone marrow database, which has 14 million entries.

The transplant will take place at the hospital attached to Duke University in Durham, North Carolina, where the family can expect to spend six months. This facility is the most experienced in cord blood transplants.

Devan's story, and that of thousands of people like him around the world, underlines the urgent need for more adult donors of mixed race and ethnic minority backgrounds to join bone marrow registers, and also shows just how important umbilical cord blood has become in the treatment for leukaemia and the pressing need to bank more of it.

"Only 3 per cent of the bone marrow donor registry is of mixed race, while with cord blood, 30 per cent are from mixed races, and that's where we got our lifeline," said his father.

Cord blood is considered particularly valuable for helping cancer patients. A child's umbilical cord, which is normally thrown away after birth, has been found to contain a small amount of blood, which is rich in immature stem cells, the source of blood cells in human bodies, and these stem cells can grow into any type of blood cells. This cord blood can be easily stored, preserved and used for matching patients who have diseases like leukaemia.

"What is otherwise thrown away at birth can save a life. A lot of us don't know about this – I didn't know about this until Devan got sick. These cells can make life. It's a no-brainer. A few years ago it was wacky science but it's being done all over the world now. And our ability to work with stem cells from cord blood will improve," said Dermot Tatlow.

Devan's story is one of incredible struggle but also one of great courage in the way he copes with a gruelling programme of treatment. I can vouch for how he has put up with suffering with great humour and strength.

He has a long road ahead and the treatment is tough for adults to endure, let alone a little boy, but the discovery of a cord blood match offers hope.

Dermot, 44, is Irish, while Devan's mother, Indira, 42, is of mixed Polish and Indian ethnicity. In a globalised world, this kind of heritage is becoming increasingly common – President Barack Obama is probably the world's most prominent example of someone of mixed race. However, the mixed race element in the registry is woefully underrepresented.

Victoria Moffett from the UK's Anthony Nolan Register said their register of potential bone marrow donors has just over 400,000 people.

"But it isn't enough," she said. "Ours is the most successful register in the UK, yet we're only able to meet around 50 per cent of requests for donors from transplant teams. Furthermore, just 4 per cent of people on our register are of Asian heritage. There is a huge and urgent need for more donors from all ethnic backgrounds, but particularly those from non-North European ancestry," she said.

In the UK, there are six cord blood collection centres – one in King's College Hospital in London established by The Anthony Nolan Trust and five others in and around London run by the NHS. There are around 13,000 cords banked in the UK, but The Anthony Nolan Trust estimates that 50,000 are necessary to meet the need.

Currently there are eight million donors in the international registry, but only 3 per cent are mixed-race donors. That's why having volunteers get tested is critical for Devan and others who are waiting.

Four-fifths of adult bone marrow donations take place via a method called PBSC (peripheral stem cell collection) and they are undergone as an outpatient appointment. It's a process similar to donating blood and most people report no feeling other than that of how wonderful it is to have saved someone's life, according to Ms Moffett. While there is the need to raise awareness of cord blood donation also, more collection centres must be established to allow parents wishing to donate to be able to do so.

"In giving life, new parents could also save a life and as the umbilical cord would otherwise be thrown away, it is wasteful to discard a lifesaving resource," she said.

The Anthony Nolan Trust opened its cord blood bank in September 2008 with one collection centre and would like to roll out the programme to other hospitals in the UK. There is an urgent need to raise awareness of both bone marrow donation and cord blood donation in the UK.

"The UK is far behind other countries in its cord blood provision – countries such as Germany, Spain and the USA have well-established cord blood collection centres and we regularly import cord blood for transplant from such countries," said Moffett.

She believes a more established programme in the UK would reduce costs in finding matching cords for transplant patients and would help the group to utilise a resource which is largely untapped in this country and is otherwise deemed a waste product.

Finding out if you are a bone marrow match is incredibly easy. You just order a registration kit from the Anthony Nolan Trust, order a registration kit, give a small sample of saliva and post it back.

One of the more ingenious aspects to this story is the way Devan's parents and family and friends launched a campaign to try and save life using the social networking sites and crowdsourcing to help him beat the odds. And the campaign is having a wider impact and has quickly gone viral.

"It's morphed a little from being a desperate search for a donor for Devan to leveraging this goodwill to get people to register to be donors," said Dermot. "We're also looking for a better match, because it's not perfect, though the doctors tell us it's enough. A couple of weeks ago we had nothing so we are in a better place now," he said.

"What's we've seen lots of, and what has gone global, is people thinking 'that could be me'. It's something a lot of people hadn't thought about. Everyone should be saving their cord blood. The campaign didn't take off just because we are good at social networking or because we're journalists, it took off because we hit a nerve," he said.

"The whole global reach of this campaign is incredible. We've got this incredible global network, it's all over Facebook and 20 million Twitter followers are seeing it," he said.

Demi Moore, Ashton Kutcher, Paris Hilton, Buzz Aldrin, Lance Armstrong and Ed Norton are among those who have tweeted about Devan's situation. He has featured in millions of Facebook statuses, while The Huffington Post, the techie blog Gizmodo and other sites have all tried to encourage people to register at the Be The Match site, hoping that they will be a match for Dev or someone else.

The campaign has had an immediate impact. The head of the national donor registry in Washington DC said they had an unprecedented 900 people calling it asking for kits. That's a massive spike. There are drives all over the place, and helping Devan has become a global effort, with hundreds of people in Britain, the US, China, Hong Kong, Singapore and many other cities trying to help with the effort to find a donor.

"We're spreading the word that other kids are in this situation. This is the anti-spam, the good that social networking can be. In a way, Devan's medical problem is one of globalisation. When you're doing everything you can to give your child the chance of the best possible outcome, the idea that something good may come out of it helps you to confront the fear that lies ahead," said Devan's father. This is about building up credit in the karmic bank.

Be The Match on Devan's website can be read at matchdevan.com

The Anthony Nolan website is anthonynolan.org.uk and the group can be reached 0303 303 0303

Donor facts and figures

* The Anthony Nolan Register of potential bone marrow donors has just over 400,000 people. This means they are able to meet around 50 per cent of requests.

* Only 3 per cent of the global bone marrow registry of eight million donors are of mixed race. With umbilical cord blood, 30 per cent are from mixed races.

* Just 4 per cent of people on the Anthony Nolan Register are of Asian heritage.

* There are 13,000 cords banked in the UK, but The Anthony Nolan Trust estimates that 50,000 are necessary to meet the need.