Matching stem cell donors have been found for 7 year old identical twins Luis and Kian King, who have a very rare and life-threatening genetic condition called Juvenile Krabbe Disease.
The lively and ‘football-mad’ boys are now due to have their stem cell transplants at Birmingham Children’s Hospital in May, and their family finally have ‘hope for the future’.
The boys will be the first children in England to receive a stem cell transplant for Juvenile Krabbe Disease, doctors have told their parents Laura Otter and Dean King.
Luis and Kian were diagnosed with the disease in October last year, which affects their brain function and leads to severe degeneration of motor skills and life expectancy.
There is no known cure for Krabbe Disease, but a stem cell transplant may delay or stop the illness progressing. Doctors advised that a transplant could potentially give the twins many more years and a better quality of life – but first they faced a race against time to find matching donors for the boys before they deteriorated too far to undergo the procedure.
Luis and Kian’s sisters Ella-Mae, 11, and Shannon, 14, who are not affected by the condition, were tested and were not a match for the boys.
How we found a match for Kian and Luis
At Anthony Nolan we searched cord blood banks worldwide for matching stem cells, after no suitable matches were found on the worldwide registers of over 25 million potential adult donors. Initially the family were told there were three potential adult donor matches, but further testing revealed these matches were not close enough to proceed.
To the family’s relief, the team at Anthony Nolan have been able to identify two units of umbilical cord blood containing stem cells which match the twins’ tissue type. These potentially lifesaving cells will now give Luis and Kian their only chance of a ‘longer and happier childhood’. Kian will have his transplant first, followed by Luis a week later.
The twins’ mother, Laura Otter, said: “I’ve always called Luis and Kian my miracle babies as they’ve overcome so much already in their short lives, after being born 12 weeks prematurely. It feels like another miracle that, despite struggling to find them a suitable donor anywhere in the world, we’ve finally got the chance to give them a longer and happier childhood.”
The twins have just returned from a holiday to Disneyland in Florida, and will soon begin ‘conditioning’ – a process of intense chemotherapy to get them ready for their donor cells.
The whole family
Kian and Luis made front page news in February when their parents went public with their search for a stem cell donor, urging people to join the Anthony Nolan register. In the two days that followed, we saw a 400% increase in the numbers of people registering as stem cell donors on the Anthony Nolan website, compared to the same period the previous week.
The family will now focus on the boys’ imminent transplant, but have vowed to carry on promoting the lifesaving work of Anthony Nolan.
The boys will appear as mascots at a Leicester Tigers rugby match on 25 April, in a bid to raise awareness of our lifesaving register to young male rugby fans.
A long road ahead
Laura said: “We know we have a long road ahead as a transplant is a serious procedure and this is uncertain territory – as far as I’m aware, this is the first time that a child in England will have had stem cell transplant for Juvenile Krabbe Disease. Even when you look internationally, outcomes have varied so much from patient to patient, so no-one quite knows what will happen.
“But just knowing there are good matches for both boys is a huge weight off our shoulders and the first step towards our future. It was never just about our boys finding a match - no-one should have to face the same agonising wait for a stranger to save their child’s life, so if we can stop other families having to wait as long for that call, we’ll be happy.”
Laura added: “We are hugely grateful to the selfless mums who have given our boys hope for the future, and to everyone who has pledged to do the same for someone else, by joining the Anthony Nolan register or fundraising for Anthony Nolan. You’re all lifesavers in every sense of the word.”
Ann O’Leary, Head of Register Development at Anthony Nolan, said: “We are absolutely delighted that Kian and Luis can move forward with their transplants now that matches have been found for them both.
“They are brave and lovely boys whose story has touched the nation and inspired hundreds of people to sign up as stem cell donors, any one of whom could go onto save the life in years to come. It’s our goal to save the life of everyone who needs a transplant so it’s wonderful that the family are carrying on the fight against blood cancer and urging even more people to come forward and support the work of Anthony Nolan – in particular young men.”
Men aged 16-30 are seriously underrepresented on the Anthony Nolan register, making up only 15% of potential donors – despite being far more likely to go on to donate and save a life than any other group.
If you’re 16 – 30 and in good health you can join the register online by clicking on the button below:
You can also donate £3 to Anthony Nolan by texting HOPE to 80010.*
* Texts cost £3 plus your standard network rate. Anthony Nolan will receive 100% of your gift. All gifts will go to areas of our work that need the most funding. We’d like to get in touch to tell you more about our lifesaving work and how you can help. If you would prefer not to hear from us via SMS, text END to 70111. If you have any concerns call us on 020 7424 6626. Anthony Nolan is a registered charity no 803716/SC038827. www.anthonynolan.org