Five-year-old Kaiya was diagnosed with acute lymphoblastic leukaemia (ALL) in March this year. She urgently needs a lifesaving stem cell transplant. Kaiya’s parents, Ruchit and Annu Patel, are urging the people of Asian community to make a stem cell donation to blood cancer charities so that Kaiya has the chance for a stem cell transplant.
Their ancestry can be traced back to Dharmaj and Nadiad gaam in Gujarat, India. Owing to her Indian heritage, the doctors have said that it is challenging, because as an Asian her chances of survival are 30% or less due to difficulty in finding a match.
Kaiya Patel from Loudwater, Rickmansworth was rushed from Watford General Hospital on March 28, where she was diagnosed to Great Ormond Street Hospital for Children, where she remained for several weeks. This rare and aggressive form of cancer affects the bone marrow – meaning her body is producing too many white blood cells. This type of cancer weakens the immune system and clotting functions and is fatal without urgent medical attention, particularly a stem cell transplant.
Before Kaiya was diagnosed, Ruchit and his wife noticed bruising on Kaiya’s legs, which Kaiya attributed to being “clumsy like her dad”. Later there was bleeding from her gums, which the parents thought odd and sought medical attention. Since the diagnosis, the little girl has endured a mix of chemotherapy, blood transfusions, high dose steroids, lumbar punctures and several invasive and toxic interventions. However, this has not stopped her from attending her school or taking care of her younger sister, aged 3. She enjoys running, gymnastics and ballet and according to her father, Kaiya has still retained her sense of humour even though she does not like the doctors’ “pins and needles”.
Nick and Priya Desai, Kaiya’s uncle and aunt spoke to Asian Voice about the lack of awareness about the stem cell donation procedure in the community. The perception of this procedure being invasive discourages people to register for it. This notion is a misconception. It is a simple procedure that comes with temporary discomfort but no short or long-term health concerns. The stem cells replenish themselves completely within 2-4 weeks, as per DKMS blood cancer charity, and donors can get back to their usual lives within a 2-3 days. Priya added that stem cell donation does not expect a sunk professional cost on the donor's part. As mentioned on the British Bone Marrow Registry's website, if you need to take time off work for the procedure you will be entitled to reimbursement of expenses. These details will be covered in your medical interview when the procedures are explained. Priya recalled, “Kaiya's younger sister was also tested to see if they were a match. Kaiya held her sister’s hand during the blood test and said that she does not want anyone to go through 'the same'. She writes letters to God, praying that she gets better soon and that God takes care of her family”.
Unfortunately, her immediate family have been tested and are not a match, but support has been pouring in from members across the British Asian community. Reshma Tailor, a UK-based entrepreneur, shared through her Instagram profile, “Yesterday I read Kaiya’s story and immediately thought of my little girl, Ava. I don’t know Kaiya and have never met her parents. Kaiya is incredibly brave but she still needs our help as a community. I registered straightaway and have requested a test kit”. Asian Voice and ABPL Group appeals to the members of the Asian community to come forward and register for stem cell donation to help Kaiya regain her chance of survival.
There are 3 places that you can go to check if you are able to help her or other similarly sick children – (i) Anthony Nolan - If you are between 16 & 30 years old – requires a cheek swab test which you can order from www.anthonynolan.org, (ii) NHS - If you are between 17 & 40 years old – requires a simple blood test at any NHS Blood donor centre but you must tell them you wish to join the British Bone Marrow Registry (BBMR), and (iii) DKMS - If you are between 17 & 55 years old – requires a cheek swab test which you can order from www.dkms.org.uk.
BAPS Charities also supports recruitment to the British Bone Marrow Registry and is organising events across UK for those who have not registered to register so that we can find a life-saving donor. You can visit BAPS website for more information. If you have relatives in India who might want to help Kaiya, they can register for stem cell donation at bmstindia.org.in or datri.org or mdrindia.org.
