A campaign has been launched to get more black and Asian organ donors to come forward. Catherine Scott reports.
In 1997, during a routine 10 week pregnancy scan, Tina Suryavansi and her husband Aky were overjoyed to discover they were having twins, especially as they had been trying to have children for four years.
But doctors were concerned that one of the babies was much smaller than the other.
Six weeks later tests revealed, one of the twins, Akash, had developed cysts on his kidneys, which meant they weren’t growing properly. The couple, from Harehills, Leeds, were told to expect the worst and prepare for the fact that he may not survive. To their delight, Tina went full-term and Akash and his sister Dinish were successfully delivered via Caesarean section in June 1998.
At just six weeks old things took a turn for the worst as Akash went into renal failure and a specialist at St James’s University Hospital broke the news that his kidney function was only operating at five per cent. By the time Akash was six-months-old he had begun kidney dialysis via a catheter in his stomach. Although he very quickly started to look better in himself, over a relatively short period of time infections developed leading to further health complications.
Tina, now 42, who is an admin assistant in the A&E department at Leeds Teaching Hospitals NHS Trust said: “Akash desperately needed a kidney transplant but he couldn’t go on the waiting list until he reached 18 kilos, which didn’t happen until he was one-and-a-half years old. We carried the bleeper around with us everywhere we went, but we never got the call.”
After six years of dialysis treatment from home and numerous stomach infections Akash’s health was deteriorating fast.
“At this point we really didn’t know which way to turn. We urgently needed to find him a kidney,” explained Tina.
In a desperate attempt to find a donor they asked if they could be tested, even though they had been told they were not compatible once before. Tina came back as a positive match this time.
“We were over the moon when we discovered the results. To know I could offer this gift to my son meant the world to me. It was the only way we could get a new kidney for Akash so I had to do it.”
The transplant was successful and Akash went from strength to strength after receiving his mum’s kidney. He no longer had to endure hours of dialysis. Seven years on he still has a healthy, fully- functioning kidney.
“It is hard to find the words to explain the difference this has made to our lives. Akash is a happy, active, 13-year-old-boy who can lead his life like a normal healthy teenager.
“Before we struggled to go out for the day and couldn’t even go on holiday, now we can do all of these things.
“Enduring years of kidney failure has left Akash with renal bone disease, which can slow him down a bit, but when you consider he was wheelchair-bound before the transplant, the difference is remarkable.”
As a result of the transplant, Akash’s father, Aky, signed up to the NHS Organ Donor Register.
Tina has carried an organ donor card since the age of 16 and in their spare time they now raise money for charity and are backing a new campaign to get more black and Asian people to become organ donors.
The campaign, launched last week, is back by celebrities including Leeds Rhinos player Jamie Jones-Buchanan.
“Bearing in mind there is a serious shortage of donors from black and Asian communities and the impact this had on my family, I would strongly urge people to sign up to the NHS Organ Donor Register,” says Tina.
“I appreciate my situation is fairly unique and most people may not want to donate an organ while they are alive but, for me, to know that one day, when I am no longer here, I will once again offer the gift of life to another person makes me realise I have made the right decision.”
Call the NHS Donor Line on 0300 1230000 for details.
Black and asian donors needed
Currently, 38 per cent of patients awaiting organ transplants in West Yorkshire are from Black and Asian communities, yet these communities account for less than two per cent of people who have signed the Organ Donor Register. To join the NHS Organ Donor Register visit www.organdonation.nhs.uk or www.facebook.com/organdonationuk, call the NHS Donor Line on 0300 123 00 00 or text ORGAN to 64118To find your nearest event please visit www.facebook.com/organdonationuk