Leeds family calls for organ donor heroes as seriously ill Akash, 17, faces second transplant wait

Akash Suryavansi, from Harehills, who has been told the kidney transplanted from his mum Tina is failing. Picture by Tony Johnson.

Akash Suryavansi, from Harehills, who has been told the kidney transplanted from his mum Tina is failing. Picture by Tony Johnson.

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Eleven years after his mother donated a kidney to save his life, Leeds teenager Akash Suryavansi is facing another agonising wait for a transplant.

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 Suryavansi pictured as a toddler.

Akash Suryavansi pictured as a toddler.

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 YEP-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’,” Tina, 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.

Tina, 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 YEP revealed that just 29 Leeds residents donated organs after death last year, while around 800 desperately ill people in Yorkshire are on the waiting list for a transplant.

Tina 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.

HOW TO GET INVOLVED

We’re urging 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 leedsth.nhs.uk/be-a-hero and tweet your superhero selfies to @Leedsnews and @LTHTrust using the hashtag #BeAHero.

Supporters can also send #BeAHero messages of support to facebook.com/yep.newspaper or send their tales of organ donation via email to jonathan.brown@ypn.co.uk.

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