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Steven’s plea for organ donors as he looks forward to a fresh start

By June 5, 2018 No Comments

A 23 year-old man from Stoke Ash is looking forward to taking up his place at university this year after a lifetime of health problems has severely disrupted his education.

Steven Featley was born with the rare liver disease, biliary atresia. He received a life-saving transplant at Kings College Hospital, London, when he was just 14 months old but, three months later, suffered a setback in the form of a hepatic artery thrombosis which meant that a second liver transplant was required. This time Steven’s mum donated a part of her liver, making Steven the first person in the UK to receive a living related liver transplant after a transplant from a deceased donor. The surgery was successful for ten years.

Sadly, when Steven was 11, a second hepatic artery thrombosis struck, and he had to undergo a third liver transplant. After seven years of losing protein, doctors discovered that the main vein into his heart was clotting. Again, the only option was another transplant in 2013.

Two life-threatening emergencies resulted in two further transplants, the fifth in 2016 and the most recent of which took place in November last year. As Steven recuperates and builds up his strength, he admits that his experience has taken its toll on himself and his family.

“I knew that I was not well from an early age,” he says. “The first two transplants took place when I was so young that I don’t remember but when I fell ill prior to my third transplant I was in year six at primary school. I missed a lot of that year and though I was warmly welcomed back by classmates I had very few friends, as I had not been able to socialise the way other children did. I was used to mixing with adults rather than my peers.

“This issue continued into high school. Although I did make one or two true friends, long periods of absence meant I struggled to socialise with the rest of the class. Since college i now have many more friends. As for my education, I only passed a few grades from high school as I missed all of year 11 due to my deteriorating health. It meant that I couldn’t do my maths GCSE until after my 4th transplant in 2014. And I didn’t gain my English Language GCSE until the end of my first year in college where I took a Business Studies course achieving the highest grades. I had planned to go to university and study accounting after college but again but was halted by ill health in 2016”.

“Although I believe I am mentally strong and have coped with a lot, I have had to have treatment for post-traumatic stress disorder. It’s not the kind of experience you can get through on your own. Children’s Liver Disease Foundation has been a real help to me throughout my life. The charity was there for my parents from when I was diagnosed age six weeks. They provided information which explained what was wrong with me and over the years they have been there, providing a listening ear and constant support for me and my family.

“Although experience has taught me not to plan too far ahead, I am really excited to have been accepted at the University of Suffolk to study financial accounting. My ambition is to become a chartered accountant as I really want to prove that all this treatment has been worthwhile.

“I am passionate about organ donation. It upsets me to see babies and children going through what I did, and I know more than anyone how traumatic the experience is for their families. My message to anyone is please join the Organ Donor Register and tell your family of your wishes. It is the greatest gift you can give as a human being. Every day people die on the transplant waiting list and more donors are urgently needed.

“I know that my situation raises difficult questions and that many people will ask why I have had six transplants when there are others waiting for one.  All I can say in response is that in each case there were clear medical reasons for my transplants, all of which were outside my control.

“I hope I have always shown to the wonderful medical team at Kings and to my family and friends that I am a fighter. I know how incredibly lucky I am to be here. The medical team have not given up on me and I am going to continue to fight for any chance of a normal life, whatever ‘normal’ is!”

Alison Taylor, Chief Executive of Children’s Liver Disease Foundation commented: “Steven has been through so much and his attitude is truly inspiring. We echo his call for people to join the Organ Donor Register and tell their loved ones of their wishes. And we wish him all the very best for starting his university studies in September.”

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