David Chaffey, 31, from Ebbw Vale, was awarded a British Empire Medal this month for services to the NHS and to voluntary and charitable services. Registered blind, Mr Chaffey works as a telephonist at Nevill Hall and the Royal Gwent Hospitals. He talks to CIARAN KELLY about the many battles he has faced throughout his life.

“I was born on June 18, 1983, by Caesarean section due to foetal distress. I have three brothers, Gareth, Ian, and Stephen. My mother, Maureen, was a nurse and my father, John, worked in the steel works. Growing up in Ebbw Vale was nice and I did a lot of sports, whether it was football, swimming or cricket.

Since the age of 11, I loved horse riding because, whether I could see or not, I could do what anyone else could. Back then, my parents were not sure what to get me for Christmas so they bought me a course of riding lessons and it really helped with my confidence and with socialising. We all helped each other out. I’m very fortunate to have my friends and family.

It was a mostly normal upbringing, but I had a sight problem and when I walked out of nursery as a child, I wouldn’t know who my parents were until they spoke. It was around the age of seven that it became a problem. My eyes were fine; it was that the nerves behind them were disintegrating.

After a week of tests, I was told that I would eventually go blind as the nerve behind my eye was disintegrating. I was diagnosed with Krabbe Disease and was just the 10th case in the whole of Europe. Krabbe Disease relates to an enzyme that is missing in the blood and causes the nerves to disintegrate.

I’m not a fan of needles so those tests are not my favourite memories. When I was told I had it, I was too young to take it all in.

I went to school at Abertillery Comprehensive and school was OK. I enjoyed most subjects, but history was not something I’d rush back to. School was great for offering one-to-one support and helping with practical work like reading. My classmates helped me out, too, with photocopying and the like.

I was eventually registered blind at the age of 14 and two years later, it was discovered that a bone marrow transplant could stop the disease in its tracks. It wouldn’t improve the damage done but would stop any further deterioration so I had to go to Great Ormond Street Hospital for more tests. That was daunting, even though I knew it would help in the long run. Perhaps, I was a bit naive?

My family were all tested as well to see if they were suitable donors. Stephen, my youngest brother, was the closest match and agreed to be the donor. However, two weeks before the transplant was to take place, we had a phone call from Great Ormond Street hospital to go for more tests. These proved that I no longer had Krabbe Disease, which they admitted, themselves, was a miracle.

I was anxious, as it was now unknown. The situation had gone from one person saying transplant to the other saying it wasn’t necessary. Where did it go? I just carried on, even though I didn’t know the severity of it all. I went home and life just went back to normal to a certain extent. I knew it was serious at the time but not knowing was as bad as knowing to a certain extent.

At 16, I went to Hartpury College in Gloucester to do a national diploma in horse studies. It’s something that I would have liked to have taken on at the time, but I eventually had to give up for health reasons. A lot was involved, whether it was looking after horses or helping out with jumping competitions at the weekend. I gained a lot of experience and rode a lot every day. I accepted that it was affecting my health towards the end and it was a bit daunting.

A year later, I attended Loughborough College for the blind for two years. Some aspects were easier but because we were all in the same boat, there was not that same lenience. All of us were not able to see; it was not just me anymore. It was a small class, of around eight people, and everyone in the college had a sight impairment to some degree. There were some ups and downs, but I made a lot of friends there and we all supported each other.

At 18, I had my first guide dog, Gina, which transformed my life. I became very confident and I was able to go anywhere without relying on anyone else. I could not believe the difference and how she would work around obstacles. She looked after me well.

Some years later, in 2007, I was treated for a chest infection but I deteriorated in December with a weakness under my left rib. I was told that I was in heart failure and was later diagnosed with dilated cardiomyopathy, which was thought to have been caused by a chest infection. That was hard as heart failure is quite a difficult term, but I had great support and once it was fully explained, I felt better.

But, in October 2008, my condition started to deteriorate and an implantable cardio defibrillator (ICD) was fitted, which would synchronise the rhythm of my heart and shock it if necessary. It’s very similar to a pacemaker and slows my heart down when it’s out of rhythm.

However, I had to be careful that I was not overdoing it and, two years later, I was out training with my new guide dog, Robyn. We were having a rest, and some food, and I dropped unconscious. The defibrillator restarted the heart. It was the worst shock and damaged my heart, but it saved my life.

It was quite surreal waiting for that call for the transplant and I didn’t have the energy to do anything, spending seven weeks in hospital. My condition continued to deteriorate over the next few months until I had the transplant. After the heart transplant, I had to go to see the genetic consultant who told me they thought the damage to my heart was caused by Krabbe Disease but it had lain dormant until I had the chest infection.

But, I’ve never given in and I’ve always been involved with raising money for different charities. The organisations have helped me as much as I’ve helped them. It’s about using your experience to help improve things. If anything, I’ve been even more active since I’ve had the transplant and I was very privileged to have even been nominated for the British Empire Medal. It was a real honour and when I first saw the letter, I thought it was just a campaign letter. It was such a privilege and I’m really happy with it.”