12-year-old Rutland hero with Chronic Kidney Disease goes viral this #OrganDonationWeek

12-year-old Charlie, from Oakham, lives with Chronic Kidney Disease (CKD) and has produced a video raising awareness around organ donation that's been viewed over 8,000 times in just a few days.

Charlie was diagnosed with CKD four years ago, but went into end stage renal failure last year.

Now he receives lifesaving dialysis treatment for ten hours every night while he waits for a transplant.

"Before I used to love swimming and I liked rugby but I can't do any of that anymore because of my treatment", Charlie said.

Charlie's video, which his mum Melina put out on twitter, shares an important message:

'It was a PowerPoint that I produced whilst I was on my treatment and it was about organ donation', Charlie said.

'The reason I wasn't in the PowerPoint is because it's a presentation about organ donation and organ donation is much bigger than just me - it's about loads of children in the world, of which 210 are in the UK.'

'A world that we've been thrown into'

Charlie's mum, Melina, sleeps in his room every night to oversee his dialysis treatment. She wants this National Organ Donation Week to kickstart conversation around Chronic Kidney Disease.

She says she didn't know anything about the disease before Charlie's diagnosis, but she now understands it's a "silent killer" that isn't as well known as other 'headline' illnesses:

'It doesn't headline with other critical illnesses, and I think that as a kidney community is what we're trying to establish, for a better understanding.'

'He will need more than one transplant in his life, a transplant is not a cure. It effectively gets him off dialysis and gives him that opportunity to go and live life for 10-15 years until his body goes back into end stage renal failure.'

'Charlie now thinks this is normal, this is his world, because he's forgotten what normal is. He was obviously born with Chronic Kidney Disease, but was only diagnosed four years ago. He's never experienced the normal energy that his peers have.'

To find out more abut Chronic Kidney Disease visit the links below:

https://www.kidneycareuk.org/about-kidney-health/conditions/ckd/https://www.kidneycareuk.org/about-kidney-health/conditions/ckd/

https://www.nhs.uk/conditions/kidney-disease/

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