Family calls for Yorkshire organ donor heroes as seriously ill Akash, 17, faces second transplant wait

Akash Suryavansi, from Harehills, whose kidney transplant from his mum Tina has failed. Picture by Tony Johnson.

The 17-year-old, from Harehills, has now been told that the donated kidney is failing and he could wait years for a new one – the average wait for a kidney transplant in Yorkshire is a staggering 1,114 days but due to a shortage of NHS Organ Donor Register sign-ups from the Asian community he is likely to wait a year longer than white patients.

Akash, who was born with polycystic kidney disease, was desperately ill in 2004. He had been on the transplant waiting list for six years when his mum Tina was found to be a suitable live donor after being tested for the second time.

The family’s last experience of the waiting list has led to fears over Akash’s future, prompting a call for people to sign the donor register through The YP-backed Be A Hero campaign, run by Leeds Teaching Hospitals NHS Trust (LTH).

“We were devastated to get the news. We have always known it would be around the corner one day and have always said to ourselves, ‘a little bit more time’,” Mrs Suryavansi, 46, said. “Having been through what we have been through, we have lost a bit of faith. We were still waiting six years, I gave him my kidney and I haven’t got another to give him.”

Akash, who has a twin sister called Dinish, was written off by doctors before he was born after they detected his kidney problem but he defied the odds and struggled through to reached six months old when he became eligible for dialysis.

With his kidneys working at just five per cent capacity after birth, toxins his organs would normally remove damaged his body, leaving him with brittle bone disease, stunted growth and collapsed veins following years of dialysis and drug treatment that has kept him alive.

Mrs Suryavansi, who works at LTH, said: “It’s a really poor quality lifestyle. We are restricted now because he’s got to be here in Leeds to be dialysed, we can’t go anywhere. He’s adapted quite well and we will try our best but it’s a horrible, horrible life. Akash has always been positive about life, he helps a lot of other children going through the same issues that he’s met over the years – he’s an inspiration to others.”

The Suryavansis’ support of Be A Hero comes after The YP revealed that just 114 Yorkshire residents donated organs after death last year, while around 800 desperately ill people in the county are on the waiting list for a transplant.

People from black, Asian or minority ethnic (BAME) backgrounds are more likely to need an organ transplant because conditions such as high blood pressure and diabetes are more common within those communities, making them more vulnerable to organ failure.

As a result around 27 per cent of patients on the transplant waiting list are from BAME communities despite representing only 12 per cent of the UK population.

Mrs Suryavansi added: “You will save a life. That’s the difference you will make. One person can change nine lives and it’s the gift of life – that’s what we are giving, that’s how I see registering.”

Click here to find out more about organ donation through the Be A Hero campaign and join the NHS Organ Donor Register.

GET INVOLVED

We’re urging Yorkshire residents to sign the NHS Organ Donor Register and become a hero.

To raise the profile of Be A Hero we’re also urging workplaces and communities to support the campaign through anything from putting up a Be A Hero poster to hosting a superhero day.

You can even download a #BeAHero mask from the campaign website – leedsth.nhs.uk/be-a-hero – and tweet your superhero selfies to @YorkshirePost and @LTHTrust using the hashtag #BeAHero.

The campaign will see us publish the heartening stories of the everyday heroes who support lifesaving transplants, the brave families who agreed to donation in difficult circumstances as well as those of families facing the agonising wait for a transplant.

The initiative is backed by likes of Sir Geoffrey Boycott, cricket star Joe Root and Downton Abbey’s Jim Carter.

Supporters can also send #BeAHero messages of support to facebook.com/yorkshirepost.newspaper or send their tales of organ donation via email to [email protected].