Beverley De-Gale OBE is co-founder and Director of Operations at ACLT. Here she sends a message to all supporters of ACLT durings its 20 year history and explains why this year public support is needed more than ever.
2016 is going to be a very special year for everyone connected with ACLT as we mark 20 years of the charity registering new lifesaving donors, raising awareness on the shortage of individuals signed to donate on the stem cell, blood and organ donor registers. It’s incredible to think how much the charity has achieved since myself and our other co-founder, my life partner Orin Lewis OBE launched in 1996 with our beloved son Daniel and daughter Dominique by our side.
I still have fond memories of our first donor registration drive at the Hackney Empire when myself and Orin went onstage to address a SOLD OUT audience about Daniel’s urgent need to find a stem cell donor. It was at the end of the stage production of ‘Independent Black Woman’ starring Angie Greaves, Felicity Ethnic and Junior Simpson. I was so nervous standing at the side of the stage waiting for Junior Simpson to introduce us on to the stage. Nothing had ever been done like this before. I feared the audience would get up and leave once I started to speak, I was also very much aware that Daniel (aged 8) was also sitting in the audience and I really did not want him to witness a mass exodus as we talked about his illness and the support we needed from the community. Thankfully no one got up and they all listened attentively, whilst I explained Daniel’s illness and that we needed the support of our community to save his life. The BBC filmed the whole event for a new TV programme that was being piloted for BBC1 called ‘Black Britain’. The BBC had organised a health mobile bus to be parked outside the Theatre in the hope some of the audience would consider joining the stem cell register right there and then. This was a real test to see if the Black community would support Daniel’s appeal. I’m happy to say that following our appeal the audience was made aware of the opportunity to give a blood sample to be tested as potential donors and to our amazement we had a queue of people filling in Anthony Nolan application forms and ready and willing to give a blood sample. I was so grateful and felt so emotional, I wanted to hug them all. All of these wonderful people who didn’t know my family from Adam but were willing to help Daniel help myself and Orin to create a movement that continues to this day. I can’t thank them enough… That was the start of our 20 year journey.
However, my most special moment was when Daniel received healthy donated stem cells from a African American female. The 16th June 1999 is the most important and special day in my life. The day was filled with moments of trepidation whilst we waited for the donated cells to arrive at Great Ormond Street Hospital. I worried that the flight over from Detroit, USA would be involved in some sort of accident or a major delay. I then worried that something would happen to the bag of pink fluid (stem cells) on route to our isolation room in the bone marrow transplant wing at Great Ormond Street. It was not until the small bag of pink fluid entered Daniel’s isolation room and the nurse intravenously injected the fluid into Daniel’s veins, that we all breathed a HUGE sigh of relieve. That day was like the re-birth of my dear son and I will always be so grateful to Doreene Carney and the fantastic team at Great Ormond Street who collectively saved our son’s life. I have many other special moments in our line of work… Such moments include each time we are told a matching donor has been found for other patients through the work of ACLT charity.
Fast forward to 2016 and ACLT, during its 20th year, has helped register an extraordinary 70,000 + individuals onto the UK stem cell registers, saved the lives of over 70 people living with blood cancer, saved many more lives through the registration of tens of thousands of blood donors and registered over 4000 individuals onto the Organ Donor Register. It’s truly amazing.
This year ACLT plans to mark our achievements throughout 2016 and whilst we do so, we will also continue to look forward as we are acutely aware we still have much work to do. The lack of African and Caribbean volunteer donors on the UK donor registers (stem cell, blood and Organ Donor Register) are still woefully low. Black and Mixed Race people still have only a 20% chance (at best) to find an unrelated match stem cell donor, in comparison to our white friends and family, who have a 90% chance (at best). As a community the power is in our hands to change this. I sincerely hope as you read this, you make the decision to help be part of the change.
The work of ACLT remains crucially important and despite the many lives we have saved through registration of donors and raising awareness, we want to ensure that through 2016 and beyond any individual living with an illness where a transplant is required in order to save their life; regardless of race, has an unrelated matched donor waiting for them.
Please support ACLT in anyway you can. Together, I’m sure we can achieve our ambition of adding another 70,000 new volunteer donors on to the stem cell register, as well as registering tens of thousands onto the blood and Organ Donor Register.
I wish you, your family and friends a happy and healthy 2016.