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20 years and counting: ACLT celebrate milestone anniversary

HAPPY TIMES: Beverley De-Gale, Daniel De-Gale and Orin Lewis

YOHANNES WOUBISHET was 19 years of age when he was diagnosed with Acute Leukaemia in Ethiopia. Because the East African country did not have the medical treatment to treat blood cancers his parents sent him to South Africa, to save his life.

Recalling his family’s predicament after a short stay in Johannesburg Yohannes said: “The medical bill was overdue in a short time and amounted to more than half a million Rands and the family tried everything to find funds, but unsuccessfully.

"My thanks goes to the ACLT [African Caribbean Leukaemia Trust] for their support at this time without which the family would not have been able to pay their dues. The cancer which afflicted me is gone now, gone for good.

“I am willing to work with ACLT if my professional input is required as the Trust stood beside me during my lowest moment, which can never be wiped out of my mind.”

Today the once sick teenager is 35 years of age and is now Dr. Yohannes Woubishet, specialising in Neurology at the Chelsea and Westminster Hospital and Imperial College London.

Yohannes Woubishet is just one of the 300 people who have blood cancer that the ACLT has directly helped during its twenty years in operation.

DONORS

When the charity was founded in 1996 by Beverley De-Gale OBE and Orin Lewis OBE no such help was available for those in the African Caribbean community diagnosed with leukaemia and struggling to find matched blood or stem cell donors to stay alive.

Beverley De-Gale’s own son Daniel who was diagnosed with leukaemia in 1993 at the age of six, found himself in this predicament. In 1995 after he underwent two years of chemotherapy and was told he was cancer free, the youngster experienced a relapse. Doctors at the Great Ormond Street Hospital in London subsequently informed the family that Daniel’s best chance of survival would be to receive healthy stem cells from a donor. But a compatible donor couldn’t be found amongst the De-Gale family. And to compound their agony they learned that there was a 1 in 250,000 chance of finding a suitable donor because there were not enough black people on the World Bone Marrow (stem cell) Register.

Recalling her initial reaction to the enormous challenge the family faced in finding a donor and saving Daniel’s life Beverley said: “When I realised I was fighting for my child’s life I knew that I had to respond quickly and decisively.”


NURTURING: Beverley De-Gale supports one man as he prepares to become a donor

Both Beverley and her partner Orin used their professional skills in Information Technology (IT) to formulate, register and promote the ACLT as a charity. Its objectives were to raise awareness of the lack of donors on the UK Stem (Bone Marrow) Register among black and mixed race individuals and to encourage people to come forward in a bid to find a donor for Daniel.

“Trying to find a donor for Daniel was like finding a needle in a haystack" explained 58 year-old Orin. “But we needed to act very quickly within a community that didn’t appreciate the importance of donating blood or stem cells for leukaemia suffers. For many in the black community it was a no no but once they trusted the message and messengers they came on board. Raising awareness in a tangible way was a massive challenge.”


SPECIAL BOND: Beverley with Daniel aged 10

Although Orin was accustomed to making presentations to board members of companies when making pitches for new IT projects he realised that reaching black celebrities to promote Daniel’s cause would require a direct approach.

For example, shortly after Gary Lineker’s son George was diagnosed with leukaemia, the couple presented the football pundit with a letter which outlined their plight, which he read and promised to pass on to black sporting celebrities.

“We waited outside Broadcasting House in London because we knew Gary Lineker presented a show on BBC Radio 5 Live,” recalls Orin. “Similarly I discovered where the former footballer Ian Wright used to live in Croydon, knocked the door and asked for his assistance and he listened. These guerrilla tactics worked.”

Through the 20 years of the ACLT’s life celebrities including the Duchess of York, John Barnes, Colin Salmon, Sol Campbell, Frank Bruno and Eric Cantona have helped raise the profile of the charity’s work, not only in the UK but across the world. ITV, BBC, NBC and CNN are just some of the media outlets who have followed the story of Daniel De-Gale.


NATIONAL TREASURES: Orin Lewis and Beverley De-Gale receive a Pride of Britain award in 2006

It was following a theatre production at the Hackney Empire in spring of 1996 during which Beverley and Orin spoke to the audience about the need for more donors from the black community did perceptions significantly change.

Beverley recalls: “After our presentation 65 people put their names on the World Bone Marrow registry followed by drives across London and the south east. Celebrities like John Fashanu and Sol Campbell also registered.”

The campaign went into overdrive from September 1998 to spring 1999 with hundreds of people registering and providing blood samples in various locations. The scope of these achievements can be grasped when compared to the 580 black or and mixed race individuals who have registered with The Anthony Nolan Trust during the last 24 years. Ironically it was a donor from Detroit in the United States, Doreene Carney, who eventually agreed to donate stem cells after listening to a presentation at work. On June 16th 1999 Daniel became the first black person in the UK to receive a stem cell transplant from an unrelated donor.

Recalling the moment Beverly said: “I was at home with Daniel and cried with relief. I was ecstatic and held on to my son.”

Yet nine years later on October 8th 2008 Beverley was to express tears of sadness when Daniel passed away from multiple organ failure, at the age of 21. His fight inspired thousands of people to become blood, bone marrow and organ donors.
Daniel’s parents believe that he waited too long for a matched donor and in the six years prior to his transplant and two years post-transplant he received too much chemotherapy, radiotherapy and other toxic treatments, which later caused drastic complications with his health.

Commenting on this period in their lives Beverley said: “Just before he passed away Daniel encouraged me to continue with my work so that others would not have to undergo what he did.”


CAMPAIGN: The ACLT is behind the campaign to find 4 year old Tommy Simpson, who has been diagnosed with Acute Myeloid Leukaemia (AML) a stem cell donor

Eight years on from Daniel’s death Beverly De-Gale and Orin Lewis continue in the work they started, receiving a host of honours in the process, including OBEs.
ACLT will celebrate its 20th anniversary this year by hosting a large-scale donor registration drive at the annual basketball ‘Hoopsfix All-Star Classic event on Sunday 5th June, in the Brixton Recreation Centre.

The donor drive will also run concurrently with an appeal for 4-year old Tommy Simpson to find him a stem cell donor. Tommy was diagnosed with Acute Myeloid Leukaemia (AML), after being admitted to hospital a few days before Christmas. The campaign has already motivated over 4,500 individuals to join the UK Stem Cell Registry and try to help save Tommy’s life.

SEARCH

Orin believes the search for more black donors has improved in 20 years, with 60 to 90 per cent of leukaemia suffers expected to find a donor match, compared to 20 per cent when the charity started.

He said: “Our work as a charity is respected by the Anthony Nolan Trust, politicians and those in the medical profession, because we are bringing in new donors on board for the black community. But one of our main challenges is insufficient funding from government institutions, which means growth is stifled. It is frustrating. We survive on ad hoc public donations. If we could receive regular donations, as little as £5 a month, then we could plan ahead and save lives. The black community needs to take responsibility because it affects them.”

With five staff working from ACLT office in Croydon and the need for their work to expand Orin believes the charity needs £500,000 a year to function smoothly. Recently he participated in the London Marathon, which he completed in 5 hours and 57 seconds, raising £20,000 in the process. 
The couple believe that with an increase in funding ACLT will be able to reach more young people.


CELEBRITY SUPPORT: (l-r): Jocelyn Jee Esien, Beverley De-Gale, Tameka Empson, Chucky Venn, Eddie Kadi and Orin Lewis

“We need to keep the message fresh in the minds of the younger generation because they will be donors for a relatively longer period of time,” asserted Orin. Beverley described the 20-year journey at the helm of ACLT as "interesting".

She said: “Myself and Orin have often felt we are in the eye of a storm and isolated. But with determination and vision we have been able to take important steps forward and when ACLT has been able to arrange matches the feeling is euphoric.”

To find out more about the work of the ACLT please visit www.aclt.org

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