An optometrist from Bedford is raising awareness and funds for blood cancer charity Anthony Nolan in memory of her husband, who lost his life to a rare blood disorder. In 2013, Poonam Shah, 38, knew her life had changed for ever, when her husband Rakesh was diagnosed with myselodysplasia- an extremely rare blood disorder in which the bone marrow doesn't produce enough healthy red blood cells, white blood cells, and platelets.
The family was told he would need to have a stem cell transplant from someone with the same tissue type as him to replace his faulty bone marrow with healthy donor cells. Tests on his brother and sister revealed them as non-matches. Anthony Nolan- a charity that brings in people willing to donate their blood, stem cells, or bone marrow, to those who need it, looked through its register and others worldwide, to see if a perfect match was available. Someone with 10 matching genes that would help ensure that Rakesh's body would accept the donor's cells. He met one 10/10 tissue type match, a female donor from the USA. However, she eventually couldn't donate.
Later, two 8/10 matches were found, one from Germany and another from South Africa. “The donor from South Africa, a 37 year old female, was willing to donate. Which we knew wasn't ideal,” Poonam said. The straining wait to find a donor and the lack of a perfect match only saw Rakesh's condition worsen. He suffered from different infections, consequentially delaying his transplant, until he received in August 2014. While his first transplant was unsuccessful, Rakesh received a second transplant in November 2014, from the same donor. However, his condition failed to improve and he died on December 20, 2014.
Poonam now dedicates most of her time encouraging people from south Asian and other ethnic minority backgrounds to join the stem cell register. She said, “I want to raise awareness of stem cell donation among people from ethnic minority backgrounds because no person should be faced with the prospect of being told that they have no match on the register.” Donors from black, Asian, and minority ethnic (BAME) backgrounds make up for only 15 per cent of the register, and BAME patients have only a 20.5 per cent chance of finding the best possible donor match as compared to 69 per cent for white northern Europeans.
Henny Braund, Chief Executive of Anthony Nolan, said, “Poonam’s heart-breaking story is a stark reminder of how much more work needs to be done to reduce inequality on the stem cell register. While it is encouraging that we’ve seen an increase in the number of people from black, Asian and minority ethnic backgrounds signing up as potential stem cell donors in recent years, it still remains the case that people from ethnic minority backgrounds face a disparity in their relative chances of finding a lifesaving donor.”
He added, “We’re incredibly grateful to Poonam for everything she is doing to raise money and awareness for Anthony Nolan. Her amazing efforts will leave a lifesaving legacy in Rakesh’s memory.”
Meanwhile, to mark what would have been Rakesh's 40th birthday, on November 16, Poonam has taken help from her friends and family to undertake 40 fundraising challenges by then. One of them is to climb Mt Kilimanjaro, on September 2, an adventure, both her and her late husband always dreamt of doing together.
“Climbing Mt Kilimanjaro on my own is a big step, and it’s also about me taking the next step in my grieving process. It’s going to be a hugely emotionally and physically exhausting experience,” she said. Over £7,500 has already been raised, and Poonam hopes to raise £40,000 by Rakesh’s 40th birthday.
Those who wish to forward donations to Poonam's 40 challenges, visit http://uk.virginmoneygiving.com/someonespecial/RememberingRaks. Save someone's life today, join the Anthony Nolan stem cell register at www.anthonynolan.org/join.
