Our story

 

In 1999 Daniel De-Gale became 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 October 2008, Daniel was taken from us at the age of 21 as a result of multiple organ failure. This was due to complications with his health having received too many years of toxicity from chemotherapy and radiotherapy treatments whilst waiting for a matching donor to be found.

 

After Daniel passed away we made a conscious decision to continue the work of ACLT, keeping Daniel’s legacy alive and saving many more lives in his name.

 

Daniel was diagnosed with acute lymphoblastic leukaemia (ALL) on the 7th April 1993 when he was just 6 years of age. He initially underwent 2 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 should go home and get on with their lives. However 9 months later the blood cancer returned (Daniel relapsed) and Daniel’s parents were told that his best chance of survival would be to receive healthy donated stem cells from a donor. Daniel’s younger sister Dominique was tested as a possible match, brothers and sisters of the same parents have a 1 in 4 chance of being a perfect match, but sadly Dominique was not a match for her brother. Family members were also tested but again no match was found.

 

It was at this point that doctors at Great Ormond Street Hospital informed the family that they would search the World bone marrow (stem cell) register of unrelated donors for Daniel, but in the same breath they said the chances of finding a matched donor for Daniel would be extremely remote simply because of a lack of Black and Mixed Race people signing up to the stem cell registers. Professor Paul Veys said that Daniel had a 1 in 250,000 chance of finding a donor because of his ethnicity. If he was White British his chances of finding a donor would have been at best 1 in 4 or 5, simply because hundreds of thousands of White Northern Europeans had signed up over the years. This devastating news was the tipping point for Daniel’s parents. They decided very quickly that Daniel’s future was going to be decided by the black and mixed race communities registering in their tens of thousands. A couple of months later the ACLT charity was founded and an International media campaign was commenced.

 

Daniel suffered 2 relapses before, in 1999, a born again Christian from Detroit, Michigan was found to be Daniel’s lifesaving donor. Doreene Carney listened to a presentation at her place of work, the US Postal Service and immediately decided to join the US register, BINGO! On the 16th June 1999 Daniel received 45 year old Doreene’s donated stem cells and became the first black individual in the UK to receive a lifesaving stem cell transplant from an unrelated donor. Six months later he went back to school, he was now 12 years of age. Two years after Daniel received his bone marrow transplant, he suffered a 3rd relapse of leukaemia but this time in his testes and he required a further 2 year course of chemotherapy as well as radiotherapy; in 2003 he was again in remission. Daniel went from strength to strength and went on to gain 12 GCSEs.

 

Daniel lived life to the full and was able to enjoy family time, holidays with family and friends. About 6 years post transplant, he started to experience other complications with his health. In 2005 Daniel developed vitiligo, about 20% of his skin pigmentation turned white. He also started to experience feelings of extreme tiredness with a severe lack of energy. His parents took him to see his consultant who did a blood test and discovered Daniel’s red cell count was very low. Daniel received a blood transfusion and seemed to be OK but within months it happened again and more blood was transfused. This cycle continued and became more frequent as the weeks and months passed.

 

 

Amazingly, Daniel gained 3 A Levels and then off to University to study Sports Physiotherapy. He wanted to be a fully trained and to gain his Masters in time for the 2012 Olympic Games.

 

By this point Daniel’s hospital care had moved to University College Hospital (UCH) in London, where the family was told that Daniel had a condition called Haemolytic Anaemia a severe break down of the red blood cells. Within 2 years Daniel was receiving 1-2 units of blood every week! He would leave home in the morning to study at University and either pop into UCH on route or once he had finished his studies he would go straight to UCH to get transfusions of blood. At first he was coping reasonably well and the team at UCH tried all sorts of medications to try and stop the Haemolytic Anaemia BUT everything they tried failed. Daniel had his spleen removed in 2008 and many courses of treatments including an intravenous drug called Rituximab and other medications like the steroid Prednisolone BUT nothing worked. By the beginning of 2008 Daniel was receiving 3-5 units of donated blood every week! Due to the multiple blood transfusions he was receiving Daniel developed a severe iron overload, he and his parents were told that he would need to inject himself with a needle in the stomach area to administer a drug regime called Desferal (desferrioxamine) over a 12 hour period, 6 days of every week. He hated this because it really did start to be intrusive on his already limited life but he dug a little deeper and got on with it.

 

Daniel continued to smile and to enjoy life, doing as much as he could with family and friends.

 

 

Daniel’s parents believe that he waited too long for a matched donor to be found, and in the 6 years prior to his transplant and 2 years post transplant he had received far too much chemotherapy, radiotherapy and other toxic treatments to combat the leukaemia which later on resulted in drastic complications with his health.

 

Sadly on October 8th 2008, Daniel sadly passed away from multiple organ failure due to complications with his health.

 

 

Following Daniel’s passing the ultimate aim of ACLT is that others should not have to wait for this length of time for lifesaving matches to be found. Donors should be found and readily available and willing to save a life sooner rather than later.