‘Please Join the Donor Register’

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Riya Pleads with Asian Community in Last Christmas Wish

A 21-year-old girl, who is spending her last Christmas in hospice care, has one final wish: for people to join the Anthony Nolan bone marrow register.

 

Riya Dandekar, from Solihull, has been told her blood cancer is now incurable, after receiving the shattering news that, despite a potential bone marrow donor being found, she is not well enough to have a transplant.

 

Doctors have told the devastated family that Riya has only weeks to live, and during the time she has left, she has vowed from her bed at the Solihull Marie Cure Hospice to sign up more life-saving donors so that others do not face the same heartbreaking situation.

 


Riya said: “My biggest wish is that every adult, who is medically fit and able, registers as a potential bone marrow donor. Every 20 minutes, someone in the UK is diagnosed with blood cancer and for many, a stem cell or bone marrow transplant is their only hope. Every week a new campaign, a new appeal, is made. All these appeals are for the same thing – to encourage more people to come forward and join the register.”

 

Riya’s proud and loving family are now facing a life without their lively, bright and kind daughter. Her mother, Ursula, said: “We are extremely proud of how brave and selfless Riya has been through her illness and the many painful procedures and months of staying in hospital that she has endured. Even though she realises she does not have long left, she hopes that people will be inspired to join a bone marrow register.

 

“Her legacy, we hope, will have been to raise awareness of how simple, quick and painless it is to register online and potentially save a life.”

 

Earlier this year, the 21-year-old student inspired a huge increase in the numbers of Asian people joining the Anthony Nolan bone marrow register, when she was diagnosed with Anaplastic Lymphoma a few days before her 21st birthday in March. Her family launched the ‘Save Riya Now’ campaign on social media.

 

Before cancer, Riya had an active and fulfilling life. “I took part in ballet, in martial arts and was in the Army Cadet force. I loved trampolining and spending time with my friends. I was working in an Indian restaurant in Birmingham, and I planned to study medicine and be a doctor, like my parents.”

But her busy lifestyle was stopped in its tracks when she was diagnosed with the rare type of blood cancer. Riya had found a lump in her armpit and began to develop unusual symptoms. “My clothes were itching me and my skin felt like it was burning. I had an ultrasound examination and underwent exploration surgical biopsy and eventually was called to a meeting with my surgeon.

 


“He pulled his chair closer to me and I immediately thought ‘this isn’t good news’. The next few moments went into slow motion. He said ‘You have lymphoma’. I asked, ‘Does this mean I have cancer?’ And he said ‘Yes’.”

 

In June, Riya was told that her best chance of a cure was a stem cell transplant. Stem cells are produced by the bone marrow but the donation is usually through blood, not the bone marrow. For her to have the best possible outcome, she needed to find a match urgently.

 

She endured eight cycles of chemotherapy and 12 cycles of radiotherapy, leaving her feeling ‘completely  drained, exhausted and helpless’, but these failed to get her into remission.

 

She was told a stem cell, or bone marrow, transplant was her only hope, and faced an agonising wait to find out if a matching donor has been found through the Anthony Nolan charity.

 

At the time she said: “I am a 21-year-old who should be out studying, working, partying, holidaying and discovering myself. But I’m not. Instead I am struggling, crying, hurting, and forever waiting.”

One third of patients are able to find a matching stem cell donor in their own family. But Riya sadly found out in June that her brother is not a match for her.

 

Blood cancer charity Anthony Nolan searched the worldwide registers to try to find Riya a match. It is particularly hard for people from Asian and other ethnic minority communities to find a donor through the register, as only 4.5% of the people on Anthony Nolan’s register are Asian.

 

A potential match was found for Riya in the USA but unfortunately doctors were unable to move forward with the transplant because she was not well enough.

 


Just seven months after her diagnosis, Riya was told that now her cancer was now incurable and she was referred to hospice care to allow her to live her final weeks in comfort.

 

Riya said: “I want to spread the message that you can be a lifesaver, by donating your stem cells. Just like after a blood donation, your own body compensates in a matter of weeks, so there are no long term side effects. Please register today and make a real difference.”

 

Richard Davidson, Director of Communications at Anthony Nolan, said: “Riya is an incredibly brave, bright and beautiful young woman and we are so saddened that she hasn’t been given the chance to live out the bright future that was ahead of her.

“What is particularly inspiring about Riya is her selfless determination to continue to make a difference for others facing blood cancer, even as she and her family face the most difficult circumstances of all.

 

“I can’t emphasise enough how easy it is to join the register and, if you’re one of the privileged people to come up as a match, to donate your stem cells. For the donor, it is a simple act – but for someone like Riya, it means absolutely everything.”

 

If you’re aged 16-30, you can give Riya her wish – and potentially save someone’s life – by joining the Anthony Nolan register at www.anthonynolan.org.


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