Please click on the above Icon to view video
(Originally written in June 2003)
The start of the nightmare
My name is Beverley De-Gale. I am the very proud mother of 16 year old Daniel and his 12 year old sister Dominique. I am also equally proud to be the partner of my beautiful “Soul Mate” Orin Lewis. My actual working profession is within a Account Management Team for BBC Technology Ltd. We manage the IT and Telephony services provided to the BBC. The AM team has the objective of managing the relationship between IT Delivery and the Account Management. My role involves an active participation in the management of the service level agreements. The role involves working closely with a portfolio of customers, to understand their needs and priorities, and turn these into deliverables. I am accountable for the management of service delivery for an extensive range of IT products covering all of my customer groups. The day job pays the bills, but I get total satisfaction from what has been the other job for the last 6 years. I am a Co-founder of the African Caribbean Leukaemia Trust. The ACLT has been set up to raise awareness, and to support and assist Black and Mixed Parentage people suffering with Leukaemia.
This long and tortuous story started back on the 7th April 1993 when after numerous misdiagnosis by various experts his numerous debilitating physical ailments were finally correctly diagnosed. It all started when 6-year-old Daniel developed flu-like symptoms. I took him to hospital three times where he was prescribed was Paracetemol. But Daniel continued to complain of aches and pains in his legs, raised glands and bruising on his body. I took him back to the hospital and insisted they carry out further tests. The tests finally revealed that Daniel was suffering from Leukaemia. The hospital told me that if I had waited another week that he probably would have died because the leukaemia cells had infiltrated his blood system very severely. Daniel was admitted to Great Ormond Street Hospital where he had a Bone Marrow check to determine what type of leukaemia he had and how severe it was. Daniel was suffering from ALL (Acute Lymphoblastic Leukaemia). We were all in a state of complete shock and disbelief and were very fearful of the next stage. But I was told that about 70% of children can be completely cured after five years
2 years of Treatment
So Daniel was immediately put a 2 year course of Chemotherapy which he completed in March 1995. For the first six months, Daniel had very intensive chemotherapy, which lasted two years. He was still able to go to school during the treatment but was in and out of hospital. After two years we were told by the hospital, "go home, enjoy life and try and forget".
Relapse
But after being in remission for just 9 months he relapsed again in December 1995, after a routine blood test revealed leukaemic cells again. Daniel was immediately started on a 2-year course of more intensive chemotherapy treatment. At this stage Daniel’s Consultants at GOSH, Dr Paul Veys and Dr Ian Hann, started looking at 2 possible options for treatment. The first was a Bone Marrow Transplant; the second was ‘relapse 1 ALL’ protocol, which is a further 2 year course of treatment. A Bone Marrow Transplant would mean that firstly a match would have to be found. Daniel’s sister Dominique aged 6 at the time was tested, she had a 1 in 4 chance of being a successful match, unfortunately it was not to be, and so all members of the family and friends were tested. Still no luck, and so a search would have to be done from the Black and Mixed Parentage potential donors on the worldwide registers, a match meaning someone with the same or almost identical bone marrow tissue type as Daniel’s. The closer the match the better his chances of survival.
The second option was a further 2 years of chemotherapy, a different timetable of drugs but with much more intensity. Because the first course of chemotherapy had not killed the disease, it was generally thought by all that a bone marrow transplant would ultimately be the best option. But the doctor’s felt confident that a second course of chemotherapy could still be successful, and that on a long term basis it would be better for Daniel.
Searching for a matching Black donor
It was at this stage that Daniel’s bone marrow consultant at London’s Great Ormond Street Hospital, Dr. Paul Veys, said that there were only 550 African, African Caribbean, and people of Mixed Parentage on the UK register, which had existed for nearly 24 years. This made Daniel’s chances of finding a match within the UK at well over 1 in 250,000. Orin Lewis, Daniel’s step-father, immediately tried to understand why the Black numbers were so low. We quickly came to the conclusion that within the Black community there was a total lack of awareness combined with a fear of needles, and myths about giving blood. These were 3 of the main reasons why Black people had not come forward.
Orin and I decided they just couldn't wait for a match to come in and took the matter into their own hands. On June 2nd 1996 we set up a registered charity called the African Caribbean Leukaemia Trust (ACLT) to raise awareness in the Black Community about Leukaemia and Bone Marrow Transplantation, to support and assist Black people and people of mixed parentage suffering with Leukaemia and any other blood related illness. Leukaemia affects both Black and White people and strikes at random; it is not contagious or hereditary. But in the Black community it is not thought of as a Black illness in the same way as Sickle Cell Anaemia, High Blood Pressure or Lupus has been.
To begin with, it was a difficult task. There was lot of walls that we hit. People just weren't interested. But when you're trying to save your son's life, 'No' is not a good enough answer." We just kept on and on. I was put in contact with Pat Younge, the Senior Producer for a new BBC programme called Black Britain.
Black Britain put me in touch with the Anthony Nolan Trust who keep the largest register in the UK of Bone Marrow donors. We were told by the Trust that although the Trust was 24 years, during that time, they had only been able to recruit about 550 black people onto the register.
But we believed we would have more success because we are black, we understand our people and we understand their fears and myths. We decided to talk to the black community, and to set up bone marrow registration clinics. Immediately we made it our mission to make the community sit up and listen to Daniel’s plight. It was agreed that through continuous campaigning on Daniel’s behalf our chances of finding him a match would be considerably increased. That was the start of a very long journey; neither of us had any idea where it would take us but sheer desperation and determination drove us forward.
2 more years of treatment
Daniel embarked on his 2nd course of chemotherapy while the campaigning began. Orin & I started creating/raising awareness about Daniel through all media sources (TV, Radio, National Newspapers, and Black Press etc). Media interest was high with lots of appeals through local and national TV and Radio and soon a small group of family and friends got together with myself and Orin to try and help change the status quo. Registration clinics were set up in the predominate Black area’s throughout the UK, and the numbers of Black people on the register started to grow. Daniel continued with his treatment and seemed to be coping with the cocktail of chemotherapy that was being pumped through his veins into his body. The drugs made Daniel extremely tired and he spent a lot of time out of school. His vital organs were continuously monitored to make sure they were not being affected. He remained positive throughout this ordeal and kept up his schooling as much as was possible.
The media campaign was at such a high profile that family members of other sufferers started coming forward asking us for help. It was explained clearly too all sufferers and their families that the bone marrow tissue type details of each potential donor are logged onto the Anthony Nolan Trusts database and it is accessible by hospitals around the World looking for matches. This meant that the lifesaving work would potentially help all sufferers awaiting matches not just the spearhead of the campaigning. This fact was made clear to all that joined, and 99.9% of those that came forward were more than happy to help save any life. On 18th October 1996 the ACLT was awarded a Registered Charity status by the Charity Commission of England and Wales.
In January 1998, 2 years after Daniel had started his 2nd course of chemotherapy he successfully completed the course of treatment, and once again it was confirmed by his chemotherapy consultant that Daniel was in remission. He was now 11 years old, and full of confidence. He had his SAT school exams in May of that year and gained excellent results. He was selected to attend the school of the family’s choice to begin his secondary education. Life was definitely on the up. Orin & I continued campaigning for other families, and also continued looking for a match for Daniel just in case. The African, African Caribbean, and Mixed Parentage register had now grown to approx. 3,500. There was still a lot of work to be done since the goal for the charity was to have a register of around 40, 000. The ACLT still had a long way to go.
2nd Relapse
In September 1998, Daniel started secondary school, for him it was like starting a new life. With the exclusion of the head teachers no one at the school realised who Daniel was or that he had suffered with Leukaemia. He settled in like a duck to water. Six weeks after the school term began Daniel told the family that he was on a short list to be the year 7 soccer team captain. He had to write a brief essay saying how he would captain the team. The next day the family left home and went to their various places of work or education. I received a devastating call from one of Daniel’s homecare nurses. They called to say that a blood test that he’d had the day before had shown some possible blast cells (Leukaemic cells) and that further tests would have to be carried out to confirm the worst possible news that the dreaded Leukaemia had returned. I was in complete shock ‘how could this possible be happening again’. ‘How would I break this news to Daniel’ He had been so brave over the years, what more would he have to endure, and what now did the future hold for him.
Daniel came home from school that evening feeling very happy with himself, as he’d been made captain of the year 7 football team, and was looking forward to the team’s first match the following day. He was congratulated on his success and then disappeared up to his bedroom to do his homework. We had earlier sat and discussed how to break the terrible news. There was no easy way and the most important thing was that we would both be there and to try and be as strong for him as possible. When he had completed his homework he came downstairs to watch TV. We sat with him and started to break the horrible news. Daniel sat quietly and listened to what was unfolding. His response was swift. He cursed, cried and asked ‘why me’ ‘why me’. Then he asked ‘will I be able to play my match tomorrow’. We had already confirmed with the consultants that he would be able to get through the weekend without any treatment, to have his football match, but that he would have to return to Great Ormond Street Hospital on Monday to confirm the worst, and to then begin some treatment. Daniel captained his team the next day to a 6-2 victory.
The following Monday a visit to GOSH confirmed that once again Leukaemic cells were present in Daniel’s blood stream, and his consultants confirmed that Daniel’s only chance of survival was a bone marrow transplant. His chance of survival without it was just 10%. If a match could be found his chances increased drastically to about 60%. It was decided by all parties involved (including Daniel) that he would be put on a timetable of chemotherapy and other treatments, and at the same time we would step up the campaign to hopefully find the elusive match. First we had to persuade Daniel to allow the campaigning on his behalf to begin again. He had been happy in his new life where no one knew of his life-threatening situation, and he was convinced that his new friends would distance themselves if they found out the truth. Eventually he conceded and agreed that his new friends would stick by him through thick and thin and that those that didn’t were not true friends. He also realised that without publicity the chances of finding a match would dwindle drastically.
More treatment & the campaign is escalated
Daniel started a new regime of treatment and the ACLT went into overdrive. Publicity was at its highest. The Duchess of York contacted me at work one day and asked if she could be of any assistance. John Fashanu visited Daniel at GOSH to offer his support, whilst the actor Colin Salmon also offered his full support after meeting Orin and I at a fundraising event. Ian Wright offered his support after hearing and reading about Daniel via messages that were sent to him through his agent. These 4 individuals eventually became the patrons of the ACLT. Their aim was to help increase awareness about Daniel and the charity. Registration clinics that were held from October 1998 onwards bought a massive response from the Black and Mixed Parentage community.
Everyone wanted to help this 11-year-old boy who had single handily brought our community together with just one aim, to find a matching donor. Celebrities attended clinics, to help encourage possible donors to come forward, and they were filmed giving their blood samples. Clinics were so successful that anything from 350 - 800 blood samples were being taken at any one clinic. Mothers and Fathers even brought their small children to be tested. Unfortunately this could not be done despite the pleading of the kids. The age range for unrelated donors in the UK is 18-56 years. However siblings and family members of a sufferer can be of any age. There was a real feel good factor at the clinics, with everyone sharing a common goal and people attended the clinics from all over the country. We felt so proud of our community. It proved that when it really mattered we could come together and hopefully make a difference. The campaigning stretched as far as the Caribbean and the USA. The Duchess of York took Daniel’s story over the Atlantic and news items and documentaries highlighted Daniel’s plight. Magazine articles about Daniel and the ACLT were also published on the East coast of America. The BBC program ‘Black Britain’ that had originally highlighted Daniel’s story was also screened in the Caribbean. Meanwhile throughout all of this Daniel gave interviews for TV/Radio/Magazines etc. and continued his treatment.
A major snag, continue or stop?
By March 1999 the register had grown to approx. 12,000. But then we hit a major snag. Unfortunately due to the ACLT’s rapid success it was becoming logistically impossible for the Anthony Nolan Trust to process enough blood samples within the UK. The publicity was so good that we were getting up to 800 people donating blood samples. The ANT couldn't cope with the demand. They put us in touch with another company who would be able to tissue type on our behalf and put the details on the ANT register
Therefore the ACLT ended up having to send thousands of samples to be tested in the USA, at a cost of $45.00 or approx. £28.00 per sample. This caused a substantial financial headache. The ACLT ended up facing an outstanding bill of £100,000. Therefore the quicker the register was raising the more the probability of finding a matching donor, but in turn the financial crisis grew. A major decision had to be faced by Orin and me. Unless we could quickly raise funds, the registration clinics would have to cease. Which in turn would have meant Daniel’s chances of finding a match would seriously be reduced. We decided to continue the registration clinics but also undertook a massive fundraising campaign to try and raise the necessary funds. Meanwhile Daniel was back in remission and the consultants would try and endeavour to keep him on a maintenance form of chemotherapy treatment until a match was found. It was vital at this stage that he remained in remission until a donor was found and a transplant could then take place. The massive fundraising campaign was so successful, generous donations poured in from all over the UK; the ACLT was able to pay off the US blood-testing bill in August 1999.
The phone call
During April 1999 I was at home with Daniel and a call came through from the bone marrow specialist, Dr Paul Veys, at GOSH. My heart missed a beat when I realised it was him. In a few short seconds many, many thoughts passed through my mind. We’d had many meetings at GOSH about the searches that were going on around the world on Daniel’s behalf, and he had appeared on TV and Radio broadcasting appeals on Daniel’s behalf. He had also attended press conferences to highlight his needs in his capacity as Daniel’s doctor, but he had never called the family home. Why was he now ringing and not his secretary?
It all became crystal clear very soon.
A matching donor had been found, yes a match had been found. Further tests (blood samples) had already been carried out and it was looking very good. How good a match was it I hear you ask? Well if you had to mark it out of 10 it would be a 9. The one marker that did not match in the past would have caused problems, but technology had moved so far forward this was no longer a problem. In fact it was an excellent match. The bone marrow specialist was so pleased he had to ring and tell the family himself.
I was in a state of disbelief and asked many questions, ‘is this person aware that they are a match?’ ‘Are they willing to come forward?’ ‘Have they just joined the register?’ ‘When will it go ahead?’ with many, many ‘Thanks’. Initially, we were very dubious because a previous match had dropped out. The donation does involve a certain amount of discomfort for the donor. But the answer to all my questions was yes, and the transplant would be scheduled for May - June time. When I put down the phone the realisation hit me with a thud, Daniel was standing in front of me asking what had happened. We had always been honest with Daniel and completely up front. It was only fair that at this stage of developments it should remain that way. Daniel’s response to the news was not surprisingly very laid back. He had been told at earlier appointments that when a match was found he would have to have more chemotherapy, also radiotherapy (he’d never had this before) with at least 8 weeks in complete isolation and a total of about 3 months in hospital. Followed by a very long recovery period. He also was painfully aware that the BM transplant was the last resort, so his response was not surprising. After many discussions with Myself, Orin, and his sister Dominique tossing over the pro’s and con’s of it all, Daniel accepted that this would be the long term answer, he once again focused his mind to a positive conclusion.
After further discussions with the Anthony Nolan Trust who had painstakingly been searching all of the registers around the world on a weekly basis on Daniel’s behalf since early 1996 and for ages no compatible matching donor could be traced, it transpired that this unknown individual had just recently come forward as a potential donor. The odds had been continuously stacking up against Daniel as time moved on whilst we hoped that his body would not succumb to the Leukaemia or the toxicity of the chemotherapy. Then suddenly this miracle person appeared out of nowhere. This wonderful person had only just recently joined the Bone Marrow Register probably at a recruitment clinic, therefore proving our theory that the donor could always be the next person who joined the register at a clinic or via the postal route. Now I was hoping that this chapter would finally come to an end.
Total Isolation
The news of the hopeful match was kept under wraps, and only a few people were told. In the meantime the recruitment clinic’s and fundraising campaign continued whilst Daniel was being prepared for the transplant. On the 3rd June Daniel and I were admitted into GOSH Robin Ward (bone marrow transplant ward) to begin the long process. It was a very dark period for Daniel. He was in a lot of discomfort because to have the transplant he had to have extensive chemotherapy and radiotherapy. He had 5 days (twice a day) of total body radiotherapy; his bone marrow was completely wiped out, gone for good. It was at this stage that Daniel and I went into complete isolation. He also spent a lot of time on his own because he wasn’t allowed to come into contact with anything that might cause infection. His blood cell counts dropped to zero.
The beginning of the end of the long struggle
Finally after 6 tortuous years of chemotherapy and over 3 years of looking for a matching Bone Marrow Donor, my 12 year old Daniel got what he truly deserved when on the 16th June the unknown donor’s bone marrow arrived at GOSH and it was given to Daniel intravenously at 6:50pm. A transfusion bag no bigger than a carton of 288ml of ribena that was it. This is what we had prayed for; this was going to give Daniel back his life. It’s incredible but true. The event was filmed by Orin and passed on to Carlton TV’s London Tonight program and showed the next day for all the viewers to see how simple it really was. That night a feeling of immense relief saturated us all and Daniel and I slept well. That night Orin went home and started the task of letting everyone know that Daniel finally got what he so deserved. The response from those that were called was overwhelming including screams of joy, tears, and laughter. The next day it was announced on GMTV, London Today and Choice FM that the miracle had happened. Daniel and I woke up at 6:00am to watch the news as it was announced; he was in very high spirits. The response was immense and not just from the Black community. Letters started pouring into the ward, it was quite amazing.
In the weeks that followed Daniel had very low periods as the side effects of all the treatments he’d had to endure over the weeks started to take its toll on him. The doctors monitored his blood results everyday to see when the donated bone marrow would start to produce white blood cells. It took about 15 days. This for Daniel was the most difficult time throughout the 6 years of treatment. He was very sore from mouth, throat and stomach ulcers. He could not swallow anything, he had no appetite and so the nurses fed a tube into his nose that travelled down into his stomach. He was fed this way until he regained his appetite.
Time to go home
On the 30th July (Dominique’s Birthday) and much sooner than anticipated Daniel was released from hospital. He returned home with much medication and with a long recovery period ahead of him. Daniel returned to school in December 1999 in a blaze of publicity, and was continuously stopped in the streets, and asked how he is doing. But as one battle is conquered we all know that for Daniel another long battle lies ahead. It will be many years being monitored and checked to see if everything is OK, before we will truly know if the Transplant is going to be a long-term success. He is happy but knows that we will help him prepare physically and mentally for the long fight ahead. He remains confident and confronts the expected and unexpected physical and mental hurdles that he and everyone in a similar position have to face on the hopeful road to a full recovery.
Daniel was back at school 6 months after the transplant. At the time Daniel says that it was good to be back at school "doing normal stuff". Now Daniel concentrates on living his life as normal as possible and is now preparing for his important GCSE school exams. We are hopeful that Daniel does well. He seems to be heading in the right direction. He says that he would like to work in Media i.e. TV/Radio Broadcasting and hopes to be a TV presenter one day. We just want him to lead a healthy, long, safe, happy, fulfilling life.
Reflections
We will be eternally grateful to this mysterious individual. We have never met the donor, but we know that the donor was a 45-year-old woman. Our family and friends all remain hopeful that one-day in the future a meeting between Daniel’s donor and us will take place. Daniel is very excited at the thought of this potentially momentous moment in the hope that it will happen. I’m so excited that I feel fit to burst with anticipation.
Daniel was the first Black person in the UK to receive a bone marrow transplant from an unrelated donor. Because of this fact many, many sufferers and their families are now coming forward because at last they see a light at the end of a very long dark tunnel. The work of the charity has continued and the numbers continue to increase.
All that we ask is that individuals on the UK and World register stay on their respective register because as Daniel’s situation has proved, anybody could be a donor now or in months or years to come. Those who are still thinking about joining hopefully will now be convinced just how important it is that they quickly register.
Thanks & Tributes
We would like to thank all of those individuals who joined the UK register after hearing about Daniel’s plight, numerous unsung individuals, the staff at GOSH and Mayday Hospital, the Celebrities, News Media and the numerous numbers of people who have helped and supported us along the way. Special thanks has to go out to all of the various ACLT volunteers who over the last 6 years have given up so much of their free time to help Orin and I raise the much needed awareness and numbers on the UK register.
Aims and Objectives
The aims of the ACLT have not changed over the last 6 years. A figure of between 30,000 to 40,000 Black people on the UK register is still one of the main aims. But now hopefully with more consistent funding in the near future a raising awareness campaign can now be seriously attempted across the UK, and in the not too distant future in Africa and the Caribbean. A celebration Dinner and Dance called Gift of Life is annually held at the beginning of June in Central London highlighting the achievement of the ACLT. The most recent celebrated the 6th year of the ACLT. The event was a sell out and the venue could have been sold out twice more. People came to celebrate the achievements of the charity and to meet the young man that brought a community together. Daniel made a speech that brought many of the attendees close to tears and was applauded throughout. He received a standing ovation. Daniel does not grasp the effect he had had on the community, because lets remember he is still only 16 years of age. He may have gone through a lot for his short years, but he is still only a boy. Albeit a very courageous, awe inspiring, positive thinking young man who will go along way in what ever he chooses to do in his life.
Orin and I have always known there had to be a method to this madness that Daniel had to live through and it is generally felt that from a negative situation a positive solution began. But at least he got the chance to live a fruitful life, thanks to this wonderful person. We knew that through his fight and his determination other Black people in the UK and around the world would and will continue to benefit from his inspiration. Utilising our motto “By Any Means Necessary” we will continue to educate the masses on just how important each 18 to 49 year old person living in the UK is in relation to helping to save a life to change a life.
My brave and handsome son Daniel De-Gale, what an inspiration he is to us all.
Beverley De-Gale
Mother
