The life and legacy of Daniel De-Gale
15 years on...
Daniel De-Gale made history as the first black individual in the UK to receive a stem cell transplant from an unrelated donor. As a direct result of the transplant and the regular blood transfusions he received, Daniel lived a happy life, finally free from blood cancer for several years. However in 2008, at the young age of 21, Daniel died of multiple organ failure. His death was accelerated from complications with his health due to many years of toxicity from severe chemotherapy and radiotherapy treatments whilst waiting for a matching donor to be found.
On the 7th April 1993 when he was just six years of age, Daniel De-Gale was diagnosed with acute lymphoblastic leukaemia. Following his diagnosis, Daniel had to undergo treatment which included two years of highly intensive chemotherapy and other toxic treatments in an attempt to beat the cancer. At the end of March 1995 his parents, Beverley De-Gale and Orin Lewis were told that Daniel was leukaemia-free and that the family could go home and get on with their lives.
Nine months later, Daniel relapsed. The blood cancer had returned. His parents were told that his best chance of survival would be to receive healthy donated stem cells from a donor. Doctors checked Daniel’s sister, Dominique, because they share the same Mum and dad meaning their chances of matching was one in four. However she was not a suitable match. So, they then looked at the wider family circle.
There are world bone marrow registers that have potential donors all sitting there waiting to be a match for anyone that finds themselves in a situation like Daniel. But in 1996, when Daniel relapsed less than 580 black people had registered in this country to join the bone marrow register. Anthony Nolan was a young boy who in the early 70s needed a bone marrow transplant after being diagnosed with Wiskott-Aldrich syndrome. The only cure was a bone marrow transplant. There was no registers for this type of thing so Anthony's mother set up the world's first bone marrow register Anthony Nolan. Then around the world, other countries followed suit.
Bone marrow matches are largely race specific. This is because HLA (Human leukocyte antigen) markers used in matching are inherited. Some ethnic groups have more complex tissue types than others. So a person's best chance of finding a donor may be with someone of the same ethnic background. Your ethnic background can make all the difference.
Bone marrow specialist doctor, Professor Paul Veys had to break the news to Beverly and Orin that Daniel had a one in a quarter of a million chance of finding a donor, because black people in this country or anywhere around the world, were not registering in large enough numbers. If Daniel was white, the chances of him finding a donor would have been one in four.
Black people come from the largest gene pool in the world, Africa. This meant that for black people needing donors, their chances were severely limited, because this kind of bone marrow type is so varied. For every one white Northern European person that was joining the bone marrow registry, black recipients needed 10 people to find their life saving match.
Meet the family
“The scale of what was required to do to turn around a community's views on being donors signing up to give a blood sample at the time to be tested to see if you can match a patient. It was something that our community just was not willing to do.”
“And so literally from our home, we set out the ACLT, the African Caribbean leukaemia trust, to not only help Dan, although he was our focus, but to help anyone that found themselves in this awful situation of needing a life-saving donor.”
Daniel De-Gale
The spearhead of the ACLT charity.
In the Autumn of 1998, Daniel migrated from primary school to secondary school. Going into a new world, with new friends Daniel hoped he could get on with life and not have leukaemia as the central focus of what was going on. But then, on a particular Friday, in September, Beverly got a call to say that nine months off treatments, they found leukaemia cells coming back. This meant that Daniel, at the beginning of his year seven school year, would have to go back on treatment.
"That day, Daniel was actually coming to tell us the great news that he was going to be the year seven football captain at his new school."
The campaign that started in June 1996, had to step up. Because of Daniels health at that time, his chances of survival were dropping to 25%, and he would need more treatment. The increased pace of looking for his donor became a worldwide media campaign, as well as the charity posting many, many registration drives around the country to try and raise awareness.
Then one Friday, Daniel's physician, Dr. Paul Veys broke the proposed protocol to ring and say they had found a donor for Daniel that was a "very good match." The donor location process took six long years. Two previous potential donors backed out of going through with the donation so the family was apprehensive with this news. However, Dr. Paul Veys insisted that the donor was definitely stepping forward.
"Dan was slightly apprehensive because one he knew that this was the last chance for him. He was 12. Can you imagine as a 12 year old child you're dealing with all of this?"
A bone/stem cell donation from a healthy donor replaces a recipient patient's unhealthy stem cells to help heal and re-boost their blood and immune systems. This restores the body's ability to create the red blood cells, white blood cells, and platelets it needs.
"He literally had the most severe form of chemotherapy, radiotherapy, total body radiotherapy, and other drugs to prepare him to receive the donated stem cells."
On the 16th of June that same year, Daniel received his donors donated stem cells, which flew in from the US earlier that day. He was taken straight to Great Ormond Street, where Daniel had been for about two or three weeks before being prepared for the actual donation.
Daniel's donor:
Daniel became the first black individual in the UK to receive a lifesaving stem cell transplant from an unrelated donor when 45-year-old Doreene Carney listened to a presentation at her place of work, the US Postal Service and immediately decided to join the US register.
Daniel left Great Ormond Street Hospital on July 30th after spending 44 days in hospital. The aftermath of the donation caused Daniel to be physically ill for months meaning he couldn't return back to school for six months.
"One thing with Daniel is his mind is very sharp, very alert"
The day Daniel returned to school, he was followed by a London film crew that went into his geography class to film him answering questions where he appeared very bright and alert. Going into his teenage years, Daniel started to get his life back as much as he could with school exams and the struggle to make friends, after a period of time away. The charity work continued and had reacted to this positive news about Daniel finding his donor.
Two years after Daniel received his bone marrow transplant, he suffered a third relapse of leukaemia but this time in his testes and he required a further two year course of chemotherapy as well as radiotherapy. In 2003 he was again in remission. But this did not stop Daniel from going on to gain all 12 GCSEs.
Beverly and Orin both left their day jobs to become fully committed to the charity work and everything on the surface seemed okay. Unfortunately, after his transplant Daniel began experiencing other complications with his health. His family believe these problems were partially caused by the fact that Daniel was forced to waited six years to receive his donors transplant. Paired with the harsh treatment of the chemotherapy and radiotherapy, as well as the countless blood transfusions.
Daniel pushed through sixth-form, achieving all three A-Levels. Then went off to university with a view to studying Sports Physiotherapy, with the end goal of being fully trained with his Masters in time for the 2012 Olympic Games.
Unfortunately in 2002, Daniel relapsed. His Leukaemia had come back.
In 2005, Daniel began to develop vitiligo where 20% of his skin pigmentation started turning white in patches. He was also diagnosed with a condition called haemolytic anaemia which meant that every week, he started to require blood transfusions.
"He would get a top up of blood and then within days, it would drop like a stone. And this was happening whilst he was at uni."
Hemolytic anaemia is a disorder in which red blood cells are destroyed faster than they can be made. The destruction of red blood cells is called hemolysis. Red blood cells carry oxygen to all parts of the body. One of the main causes of hemolytic anaemia is bone marrow failure.
Daniel would go to university in the morning then on his way he would stop at University College Hospital in London, receive blood transfusions and then just try and get on with life.
Daniel went on for 18 months needing three to five units of blood every single week to survive.
"And for that, we are grateful to all of the people that donate blood, who had the same blood type as Daniel, in order to give him that opportunity to keep getting on with life."
But the regular blood transfusions became a problem because the blood that Daniel was receiving was not well matched enough. The more blood a person needs, the more antibodies are created. It was becoming harder and harder for the physicians who look after blood transfusions to match Daniels blood with the blood that they was receiving from the donors who were mostly white, which was problem for Daniel.
If you donating to someone that needs it on a regular basis, then ethnicity becomes a factor. Especially if it's a sickle cell patient that needs well matched blood because of certain subtypes that you find it more black people than any other group. Similarly to cancer patients like Daniel who have a history where they need regular blood transfusions, it's best to go back to the same people. However, these people aren’t always there, and so the antibodies build up an iron overload blood. If you have too much iron in your blood, you need to release them. So that was a vicious cycle Daniel experienced because he needed the blood transfusions but it was causing his antibodies to overload. He then had to have to have a self-administered procedure to get rid of the iron overload.
At end of September 2008, Daniel migrated from Great Ormond Street Hospital into University College of London. Daniels health was deteriorating and doctors were still trying to find a correct match. But his organs, especially the liver and kidneys, were not strong enough to absorb what he needed to survive. Doctors told the family that one of them may have to donate a liver to Daniel. When people donate a small section of their liver, it grows back in full size. In the end, doctors told the family not worry as they had a liver ready for Daniel. He needed to move into a specialist hospital, which was just outside of London, but he wasn't strong enough.
Daniel passed away on 8th October 2008 from multiple organ failure, as doctors tried to move him from University College Hospital to the location of his organ donation. He was just 21 years old.
"I just couldn't be there. It was too much for me. And I waited outside and then they came out and told me that he'd passed away. So that was our Dan and it’s 15 years down the road, and it still makes me cry, just thinking about the whole thing, you know."
Orin Lewis and Beverly De-Gale say that their proudest achievement was to have a "positive impact" on members of the black community.
To mark 15 years since Daniel passed away, the family are hosting an event at the Fairfield Hall in Croydon.
Photo and video credits: ACLT Charity
Beverly and Orin are now working with the Department of Health and the NHS in order to get more government led policies made on organ, blood and stem cell donation. They would like ACLT to "sit at the head table" when these discussions are being made.
"Things that are happening out there now are directly linked back to our input due to the shaping and fine tuning of the project work that we do which tries to make a difference"
Both Beverly and Orin work to try and make sure that the "unmet need" of people of colour is brought to more clarity to their white counterparts. They say it is a "big work of progress" but want to be at the front of that debate. The founders express that they have some work to do to ensure that when black patients need stem cell, organ or blood transplants, that their "automatic go-to" is the ACLT charity. Although they do not know who the identity of the people they are helping both Beverly and Orin say "it's enough" for them to know that their work helped the lives of people and made a change that was transformative". The pair say their work makes them feel very "proud" and puts a "pep in their step" to know that these individuals and their families are doing fine because of the work they have done behind the scenes.
"The good thing about what Daniel achieved, is that he personally, directly saved countless and countless lives, because many people who registered to try to help him have gone on to be donors for people decades later. And his effect is astronomical in terms of the amount of people he's directly impacted on in terms of saving lives and the ripple effect on the families and friends of those people."
"There's always a spearhead. A reason why that causal started. And I guess that is Dan. It’s just very unfortunate for us, and certainly for Dan, that he had to be the catalyst for this. Because once he had his transplant, he was always leukaemia free. The leukaemia never came back. It's what he had to undergo prior to receiving it that actually caused the problem. If Doreen had been found far earlier, I'm convinced you will be having this conversation with him now and not us.
Brenda McKenzie's Story
Mother-of-three Brenda McKenzie was given five years to live in 2019 after being diagnosed with a rare form of blood cancer called cutaneous T-cell lymphoma. Less than 350 people in the UK are diagnosed with the disease each year. Brenda's only hope of survival is to receive a stem cell donation from an unrelated donor.
Cutaneous T-Cell Lymphoma is a form of cancer that causes immune system dysfunction that leads to skin health concerns. Like other forms of cancer, Cutaneous T-Cell Lymphoma can be deadly, especially if the condition goes untreated until it reaches the advanced stages.
Throughout the process of a stem cell donation, blood is taken through a tube (catheter) in a vein through the arm where a machine extracts the stem cells. The process takes a donor's healthy blood-forming cells and puts them into the patient's bloodstream, where they begin to grow and make healthy red blood cells, white blood cells and platelets. Patients receive high doses of chemotherapy to prepare their body for the transplant.
On a day-to-day basis Brenda has to endure extremely dry skin due to the disease which means she has to ensure she constantly moisturises throughout the day. She says the disease has affected the tone of her skin, making it four shades darker than her natural complexion. Brenda says this the disease has "affected every aspect of my life not just my skin, but my appearance and the way I feel in terms of my emotions is really awful." Paired with this, Brenda has experienced hair loss as well as the weakening of her nails.
"It's quite debilitating at times as I can experience lesions tumours like I've had in the past. So I have to deal with that as well and the pain."
As the cancer progressed, it began to attack Brenda's immune system which called a lot of sleepless nights where she would profusely sweat. Brenda had to bathe two or three times a day and put emulsifying treatments on to moisten her skin. She attended regular hospital visits and needed to follow a strict regime. To avoid any cracks or infections, Brenda has to make sure she applies medical creams everyday.
"It’s very devastating for my three children. They're finding it very difficult. They don't talk about it too much but it is hard for them because they don't want to they don't to lose their mother. They've already lost a brother and their father."
The black community should have the same opportunities as white people who need stem cell donations. Gloria expresses how detrimental it is for black people in her position. Gloria a higher intake of blood donations from black people to match the amount given her white counterparts.
"It’s heart breaking to know that if I were white, my chances of survival would be so much more."
She says it is very disheartening for her to live knowing that her chance of survival is so low. Gloria says that she "tries to have some hope that there will be a change but being realistic she does not know as the intake of donors is so low in the black community.
Gloria Olutayo's Story
Gloria Olutayo is a sickle cell survivor from London who received a suitable blood donation with help from the ACLT charity which cured her of the disease.
Gloria was originally born in Nigeria. This is where her sickle cell story began. When she was a young child, Gloria's mother noticed that she was not able to read, write or do a lot of other physical things other children her age could do. Paired with this, she experienced "serious learning difficulties" at school which became a significant for both Gloria and her mother concern.
Approximately one-third of children with SCD (Sickle Cell Disease) have some form CNS (central nervous system) effects from the disease, which typically manifest as deficits in specific cognitive domains and academic difficulties.
Gloria's Mother assumed her issues were due to delayed learning difficulties that appear in some children who are diagnosed with sickle cell. Gloria then started to experience what doctors call "crises". This is when her mother decided to get medical advice at a hospital in Nigeria.
Episodes of pain known as 'sickle cell crises' are one of the most common and distressing symptoms of sickle cell disease. They happen when blood vessels to part of the body become blocked. The pain can be severe and last for several days or weeks.
"I described it as a roller coaster journey because doctors told me I was fine and just had a cold. This was the case for the first 10 years of my life."
Despite the many doctors appointments Gloria attended in Nigeria, no doctor could explain what the real reason for her pain was. This was until Gloria arrived in the UK in 2013 at 10 years old. Through various MRI scans and blood tests, doctors were finally able to diagnose her with sickle sell disorder. Due to a previous incident in Nigeria where Gloria fell off a bike and was not able to walk for months, doctors also told her that experienced a partial stroke as a result of this. Gloria said she did not know how to feel, finding out all of this information as a 10 year old. She explains that doctors did not fully explain her diagnosis to her in a way that she could understand.
"I just wanted someone to break it down into layman’s English. It was really confusing because I didn't know how to feel. I didn’t know whether to be happy, sad or just give up on everything?"
After being diagnosed with sickle cell, Gloria was immediately put on treatment to prevent her from having another stroke. Doctors started her off with regular blood transfusions where she could only safely receive this if her sickle percentage was at a safe level. To follow this, Gloria had regular scans to check that her brain, heart, kidneys and lungs were all working. Doctors prescribed young Gloria up to seven different medications to take at a time. When she was most unwell with the disease, Gloria said she would go to sleep and wake up with extreme pain where "no amount of paracetamol or ibuprofen could stop it." Gloria said she could never pinpoint exactly what triggered the pain because she could be doing the least stressful thing possible and it would lead to a crises. Gloria recalls an occasion where her chest pain in was so intense that it spread to her back causing her to lose sleep. This led to a week long stay at the hospital with doctors keeping her in to prevent a further chest infection.
Sickle cell is the fastest-growing blood disorder in the UK and is significantly more likely to impact black people. People with sickle cell disease produce unusually shaped red blood cells that can cause problems because they do not live in the form of long, healthy blood cells and can block blood vessels.
A blood and bone marrow transplant is currently the only cure for sickle cell disease, but it is not for everyone. Many patients who have sickle cell disease do not have a relative who is a close enough genetic match to be a donor. This disease is a serious and lifelong health condition, although treatment can help manage some of the systems.
Sickle cell patients rely on carefully matched blood transfusions to treat their illness, but there’s a shortage of suitable donors. This is why it’s important to raise awareness and encourage the African, Caribbean and mixed-race communities to be regular blood donors, to ensure there is enough matched blood to meet demand and help the 15,000 sickle cell patients living in the UK.
Gloria came came across the ACLT charity one day at college when she saw its members encouraging the black community to donate blood.
She spoke to one of the members who asked if she was interested in donating blood, but because of her sickle cell disease, she was not sure if she was eligible to donate safely. This is when Gloria was given the contact details of Beverly De-Gale who asked her to reach out for help in an appeal. After sharing her story with Beverly, she began working with the charity who aided in the location of a suitable blood donor for Beverly.
For confidentiality reasons, Gloria is not able to identify the person who donated the blood which saved her life but says that she is "extremely grateful".
Why Brenda thinks only 1% of blood donors in the UK are black...
Why the founders of ACLT think only 1% of blood donors in the UK are black...
Why Gloria believes only 1% of blood donors in the UK are black...
The story of my first blood donation
Filled with inspiration from the founders of the ACLT charity, Beverly and Orin, on the 11th May 2023, I gave my first ever blood donation. I was told that my 470ml of blood could help up to three people. The nurses informed me that my blood was used at the Royal Papworth Hospital in Cambridge.
Appeals like Brenda's reminds me just how important it is for people of my ethnic origin to donate blood. A decision to donate your blood can save a life, or even several if your blood is separated into its components – red cells, platelets and plasma – which can be used individually for patients with specific conditions. A lot of people can feel deep sympathy for Brenda's situation but if someone we knew personally was faced with her life uncertainty, we would act and do something to change it. If Brenda finds a suitable donor, her life can be saved. The same way Gloria received a blood transfusion that saved her life, you could have the possibility to do that to so many people.
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