27 June 2018
The Prime Minister, Theresa May, has recorded a personal message urging the public to register as potential blood stem cell donors to give more people a second chance at life.
Theresa May raised the issue of the need for more potential lifesavers, especially those of a black, Asian and mixed race (BAME) background, to register after hearing four-year-old Layla Mistry’s story.
The video was aired at the first registration event hosted by the family and us at the Reading Hindu Temple on Saturday 16 June.
In 2016 Layla, from Sonning, Berkshire, was diagnosed with an aggressive brain cancer, Medulloblastoma, and has been fighting for her life ever since after also suffering from two bone marrow failures.
Layla’s mum, Nimita, 36, said: “At first we thought it was an ear infection, as she was getting sick and losing balance. Never in our wildest dreams did we think it was cancer. As parents it’s heart-breaking to witness your child go through something like this.”
The toddler has received intensive brain surgery, over 40 blood and platelets transfusions and six rounds of chemotherapy, including one at a high-dosage. In 2016 her own stem cells were harvested to try and restore her bone marrow. Unfortunately this has failed on previous occasions as her own stem cell may be dysfunctional in some way. Therefore, if it occurs again she will need to rely on a stranger to help save her life by donating some of their blood stem cells.
The family is keen to raise awareness of the importance of blood stem cell donations and has teamed up with us to encourage people to #DoIt4Layla.
The shortage of donors
The shortage of registered BAME donors means that BAME patients have only a 20.5% chance of finding a matching donor, compared to 69% for Brits and northern Europeans. This is due in part to the low numbers of donors registered from those backgrounds, and because BAME patients tend to have more varied tissue.
The Prime Minister raises this in the short film, saying: “Stem cell therapy is an incredible treatment helping tens of thousands of people around the world who are affected by terrible diseases such as brain cancer and leukaemia.
“These conditions don’t discriminate, they can strike any of us in any community, yet the hope that comes with a stem cell or bone marrow transplant is only available to patients for whom there is a suitable donor. And as things stand, not enough people from our ethnic minority communities are on the register.
“It means a child who, like Layla, comes from an Asian background has just a 1 in 5 chance of being matched with the donor who could cure her condition.
“That’s why it’s so important that we have a national stem cell registry that really reflects the diverse nation in which we all live. Layla and children like her are fighters. They’re not going to simply give up in the face of cancer and other diseases but to win the battle they need us to offer our help and by registering as a donor and encouraging others to do the same.”
A family on a mission
Nimita said: “On the outside, Layla is just like any other four-year-old girl. She loves Peppa Pig, playing doctors with her teddies and causing mischief with Dylan, her brother and also her best friend in the world. However, in the last two years Layla has gone through more than any child should and has been in and out of hospital. Despite this she always had a smile on her face and shows incredible strength and bravery.
“As a family we feel it’s really important to raise awareness about the importance of blood stem cell donation. Layla may need to rely on a stranger to save her life in the near future. We would urge anyone who can to register with DKMS. You could potentially be a lifesaver for Layla or someone else in need of a transplant.”
The family said: “We would like to thank Theresa May for her message and for raising much needed awareness of this issue. We hope that this will help encourage people to take the first steps in becoming a potential lifesaver.”
How you can help
Anyone between the ages of 17-55 and in good general health can go on standby to potentially save a life. Check your eligibility and sign up as a potential blood stem cell donor today.