Mum’s pleas for more potential blood stem cell donors to register this Black History Month.
A mother has joined forces with blood cancer charity DKMS to urgently call for more people, especially those of a black, Asian and ethnic minority background to register as potential blood stem cell donors this Black History Month (1 October – 31 October).
In April, Blessing Olalemi, 39, originally from Barking & Dagenham in London but now lives in Newcastle Upon-Tyne, tragically lost her eight-year-old daughter, Valerie, to a rare hereditary immunodeficiency called chronic granulomatous disorder (CGD).
The condition prevents white blood cells, which help the body to fight infections, from working correctly and a blood stem cell transplant offers the best chance of survival. Unfortunately, a matching blood stem cell donor wasn’t found in time for Valerie and she lost her fight in April this year.
The fatal condition also affects Blessing’s four-year-old daughter, Praise, who was diagnosed at birth. Doctors told the family they would need to rely on a complete stranger to help give Praise the best shot at a second chance of life.
Every 20 minutes someone in the UK is diagnosed with a blood cancer, such as leukaemia, myeloma or lymphoma and often a blood stem cell donation is the best – and sometimes the only - treatment method to help give someone a second chance of life. Yet, only 2% of the population are registered as potential blood stem cell donors.
Praise’s Nigerian heritage means she has already had a reduced chance of finding a suitable donor. As patients from a black, Asian or other minority backgrounds have a 20% chance of finding the best possible stem cell donor match, compared to 69% from northern European backgrounds. A donor is identified through genetic matching and in the majority of cases will be someone of similarly ethnicity – however there has been cases where your genetic twin isn’t necessarily your ethnic twin.
Therefore, it is imperative to register more potential blood stem cell donors and especially help to diversify the UK’s aligned blood stem cell registry as currently, BAME donors represent 13% of the 1.9 million donors on the registry. You never know who you could be a match for!
Last month, Praise underwent a blood stem cell transplant at the Great North Children’s Hospital. Due to the lack of donors there wasn’t a ‘perfect’ match, so the transplant went ahead with the best possible match. Praise is currently recovering in hospital as it’s a crucial time to see if the transplant has been successful.
Blessing said: “With time running out we had to go with our best option and we’re grateful for that person for registering and doing such a selfless act. It’s been a heartbreaking situation to be in. We’ve barely had a moment to grieve our middle daughter and now we’re praying for our four-year-old Praise to survive.
“My husband, John, and I desperately want to encourage more people especially those from a BAME background to sign up as potential blood stem cell donors with DKMS. Hopefully, this will prevent others from falling into the same situation as our family. If we had more people on the register, Valerie might have found her match and still be here and Praise would have been matched with a stronger donor.
“Both my daughters underwent years of extensive treatments. The price you pay waiting for a match is a high one. Valerie paid with her life, whilst Praise has experienced deafness along with other complications and it’s still touch and go. I wouldn’t wish this on anyone, so whilst many of us focus on Black History Month, we’d like to take this opportunity to change the future narrative for black donors and those from the wider BAME community.”
Jonathan Pearce, Chief Executive of DKMS UK, said: “We have this year developed specific activities to guide our work in supporting the further diversification of the UK’s aligned stem cell registry. The key to this is increasing the number of people from BAME backgrounds and communities on our register to be over-representative of the actual BAME populations in Britain.
“We know that some BAME communities are under-represented as potential blood stem cell donors in DKMS UK’s register, such as people from Black African-Caribbean, Bangladeshi, Pakistani, Chinese and mixed ethnicity backgrounds. So I would urge anyone that can register as a potential blood stem cell donor to please take action and go on standby to help save a life.”
If you are called upon to be a match for someone, there are two donation methods. Around 90% of all donations are made through a method called peripheral blood stem cell (PBSC) collection. This method is very similar to giving blood. It involves blood being taken from one of the donor’s arms and a machine separates the blood stem cells from it. The donor’s blood is then returned to them through their other arm. This is an outpatient procedure that is usually completed in 4-6 hours.
In just 10% of cases, donations are made through bone marrow collection. Bone marrow is taken from the pelvic bone under general anaesthetic and this lasts around an hour.
We need many potential blood stem cell donors from all backgrounds. If you are aged between 17-55 and in good general health, you can show support for Praise and the other 2,000 people in need of a lifesaving transplant by registering online at www.dkms.org.uk/praise for your home swab kit. You’ll join over 680,000 lifesavers-in-waiting ready to make a difference and help give someone a second chance at life.