Adam Hughes: Just after his transplant.

FOR Jess Evans and Mike Houlston from Cardiff, the birth of twin boys Teddy and Noah on April 22 2014 was one of both heartbreak and hope. Teddy was born with a rare yet fatal condition – anencephaly – but his parents were determined his short life would not be in vain. Once the diagnosis was confirmed during pregnancy, the parents discussed and wanted, if possible, for his organs to be donated. The family managed to spend precious time with him before he passed away and Teddy became the youngest organ donor in the UK. In the last ten years, 39 babies younger than two years old have become organ donors helping to save the lives of strangers.

As his twin Noah celebrated his first birthday the family used the anniversary to mark the occasion when his brother Teddy became a hero. His kidneys were transplanted to help save the life of another person.

Jess, 28, said: “Knowing that part of your loved one is living on in someone else is comforting. If it stops any other person going through the same thing then this can only be good. Teddy´s life had a very important role to play. Unless you have been through the same thing or know someone affected it´s hard to understand how important organ donation is.”

Mike, 30, added: “We want Teddy´s story to inspire others and help break any taboos people might still hold regarding organ donation. Organ donation wasn´t prominent in my life growing up and while I was up for it I never got round to doing anything about it. I´m sure there are many more men like me who think the same! I want to spread the word as much as possible about how organ donation saves lives, and that we should all speak to each other about our wishes. Without that discussion it is a very difficult conversation to have when it comes out of the blue. Put simply, you should ask yourself the question “Would you take an organ if you needed it?” Everyone would do so if the truth were told so we hope what Teddy did can educate people and prompt them to get talking.”

April 22 2015, the one year anniversary of Teddy’s heroism, was also a personal milestone for myself, it marked six months to the day since I received my kidney transplant and got to experience first hand the ‘gift of life’. In April 2013 I was admitted to hospital with symptoms of cramps, breathlessness, headaches, nosebleeds and chest pains. A simple blood pressure test at the doctor’s surgery had indicated a blood pressure reading of 230/170, high by anyone’s standards, but stratospheric for a 25 year-old.

This was the start of a three week stay in hospital. I had suffered Chronic Renal Failure, my blood readings were so dangerously unbalanced that I was told I may not have survived a fortnight longer. My blood pressure had been so high for so long that my heart’s muscular walls had doubled in size, I was seriously ill. Although I knew I hadn’t been feeling right for a few months, my decline from being a fit and healthy individual to being registered on the transplant waiting list was swift.

For nearly two years I was in a daily routine of medications, injections and ten hours of dialysis which took place overnight. I was unable to eat almost all of the food I liked and travel, which had been one of my main interests, was made almost impossible through the sheer amount of equipment and supplies I would have to take with me in order to survive.

For me the only option was a transplant and with an average waiting time for a kidney of between three and five years I was incredibly fortunate to have received a match in just under two years. I am one of the lucky ones and the need for donors has never been more urgent. More than 8,000 people in the UK need an organ transplant. Despite the huge advances in medicine and the great success of transplant operations, people are still dying while waiting.

There is a critical shortage of organs and the gap between the number of people waiting for a transplant and the number of organs donated is increasing. One donor can save the life of several people, restore the sight of two others and improve the quality of life of many more. The more people who pledge to donate their organs and tissue after their death, the more people stand to benefit.

In a recent survey 90% of people said they supported organ donation and almost everyone would accept a transplant if they or their loved one needed one. Yet only a third of people in the UK have registered to be an organ donor. Last year, over 40% of families refused to allow organ donation to go ahead, sometimes even when their loved one was a registered donor.

In September 2013 the Welsh Assembly passed what it described as it’s ‘most significant’ legislation to date. From December 1, Wales will be the first UK country to introduce a soft opt-out system for organ and tissue donation. The new law aims to make it easier for people in Wales to become organ donors. From this date, if you have not registered a decision to opt-in or opt-out of organ donation, you will be treated as having no objection to being an organ donor. This is called deemed consent. Thus meaning that if you did not want to donate your organs then you would have to ‘opt-out’.

In 2012/13, 36 people died in Wales whilst waiting for an organ transplant as a donor could not be found. In 2011/12 30,000 people died in Wales. Around 250 of these died in a way that would have allowed them to become a potential organ donor. But only 67 people became organ donors. Through the ‘opt out’ legislation it is hoped that waiting times for people requiring organ transplants and the number of preventable deaths can be reduced significantly.

It is rare for families to be in the awful situation where their loved one could be a potential donor. In 43% of cases where organ donation is possible, families say no to donation because they don’t know whether their loved one wanted to be a donor. When the new system is in place, families will know their loved one could have opted out if they didn’t want to be a donor. Therefore by proceeding with organ donation, they can be reassured that they are carrying out the decision of their loved one.

The law will mean if you support organ donation but simply haven’t got around to signing the Organ Donor Register, you won’t need to. As someone who has experienced first hand the positive impact organ donation can have upon a person’s life, the law change is an extremely positive move. Despite this I would still encourage people to sign up to be an organ donor. My message is a simple one: if you would accept an organ, surely you should be prepared to be a donor. Sign up to the NHS Organ Donor Register and tell your relatives that you want to donate. You can do this online by following the links on http://www.organdonation. nhs.uk or by calling 0300 123 23 23.