The spotlight will be turned on Preston on Sunday as campaigners seek to raise awareness about the need for more organ donations from the South Asian community. Fiona Finch reports on their appeal for a donor for a very special little girl.
An urgent plea is being made to Lancashire’s South Asian community - please can you donate a kidney to save Anaya’s life?
The heartfelt plea comes from the family of 22-month-old Anaya Kandola.
Anaya is from Newcastle, but has relatives in Preston, Blackpool and Manchester.
The family is travelling to Sikh Gurdwaras (places of worship) over the next fortnight to appeal for potential donors to come forward.
The appeal arrives in Preston on Sunday, November 25 from 10am - 2pm at the Guru Nanak Sikh Gurdwara at
24 Tunbridge Street.
Teacher Gurkiran Lally from Manchester, whose cousin is Anaya’s mother, said: “Anaya was born five weeks premature with a condition called ARKPD (autosomal recessive polycystic kidney disease). Her liver was abnormal and she had two enlarged polycystic kidneys. Both kidneys have been removed and she is on daily dialysis for 10 hours.”
At first it had been thought that Anaya’s father could be a donor when the time was right for a transplant. But further health problems mean that this is no longer the case.
Gurkiran, (pictured right), said: “With Anaya’s condition and lack of kidneys she is prone to pneumonia and infections so she has needed a lot of blood transfusions. Her dad is no longer a match. Family members have come forward and there is still no match.”
She explained: “They are travelling the country seeking a donor and say it is especially difficult because members of the Indian/Asian community have not traditionally considered organ donation.”
Gurkiran hopes the campaign will not just help her young relative, but also help other people in the future through raising awareness of the ongoing need for organ donation - whether it be donating a kidney or filling in a form to donate organs after death.
She said: “For successful transplant Anaya needs a live donor from an Asian background. She needs a live donor from an Asian person aged 30-42 in good health.”
The donor must be of blood type B or with a BMI (Body Mass Index) of 30 or under,who are healthy.
Gurkiran said: “This sounds simple but there is a huge shortage of organ donors from Asians. So Anaya could die waiting for a kidney. We can’t let this happen. She is our little warrior.”
She continued: “Anaya’s mum, dad and family are campaigning to share her story and build awareness in our community about the good of registering as organ donors. We are all helping out in our spare time to share Anaya story and raise awareness in our south Asian community. My father-in-law Dr Hardev Singh GP will be there in Preston, along with my cousin Dr Arvinder Singh consultant anaesthetist.”
A poster being distributed by the family advises of the urgency of their appeal: “She has dialysis every night. To survive Anaya needs a kidney transplant... You could be her best chance of life! Share your spare kidney!”
It also carries the message: “You only need one kidney to survive, but have been blessed with two.” The appeal will go not just to Preston but to Thornaby, Newcastle upon Tyne and Coventry - and that will be just a start. Gurkiran said: “The appeal is not only for members of the Sikh community but for anyone of South Asian ethnicity, Indian, Bengali, Gujarati or Pakistani. It’s for us to share Anaya’s story and encourage people to think about becoming an organ donor.”
Being the right blood match is only a start. A potential kidney donor must meet other medical criteria and would need counselling or assessment before going forward with a donation.
Earlier this year a national campaign was launched focusing on the shortage of black, Asian and minority ethnic organ donors. It revealed one in five who die waiting for a transplant is now from these communities.
A spokesman for the national NHS Blood and Transplant authority said: “There is an urgent shortage of organs for transplant for people from all backgrounds but the problem is particularly acute for kidney patients from black, Asian and ethnic minority (BAME) communities.But black and Asian families are less likely to agree to deceased organ donation.”
He continued: “21 per cent of people who died on the waiting list last year were from a black, Asian or ethnic minority background compared with 15 per cent a decade ago. Family refusal continues to be the biggest obstacle to organ donation among these communities. Only around half as many families support organ donation compared with families from a white background.”
However, attitudes are changing and the spokesman continued: “BAME communities are however responding positively to become donors. 114 donors last year were from black, Asian and ethnic minority backgrounds and this is increasing thanks to more families saying yes to donation when asked in hospitals.”
In 2017/18 there was seven percent increase in consent rate among the families of potential BAME donors compared with 2016-17.
* If you cannot attend the November 25 event you can contact the family on Facebook at Hope4Anaya or email them at Hope4Anaya@gmail.com For more information on living donation and to access the expression of interest form see: www.organdonation.nhs.uk/about-donation/living-donation/
*To register as an organ donor see: www.organdonation.nhs.uk/
* There are 21 transplant centres in England, Wales and Scotland
The appeal for a kidney donation is going out to those of Asian /Indian heritage aged between 30-42, from Blood Group O or B with a BMI (Body Mass Index) of 30 or under, who are healthy.