View from inside

My name is Faye Wylie. I am 28 years old and I have a condition called Leigh syndrome, a rare mitochondrial disease which affects my entire body, particularly my muscular system. I now run a small organisation called Leigh Network, which supports and brings together families affected by mitochondrial diseases, as well as supporting mitochondrial research in Newcastle. Here is my story. I was born in East Yorkshire and grew up in a lovely countryside village with my parents and baby brother, Sam. In 1993, when Sam was a year old, he began to have a wavering eye. After tests, doctors discovered this was neurological. Further tests showed it was likely to be Leigh syndrome. He lost his fight at 19 months old. By the time I was aged 7, I was riding my bike without stabilisers and I used to love doing this with my dad. We would go for long bike rides through the village, passing by friends’ houses, fields and farmlands. Despite being able to ride for miles, when I walked, I would have to stop for a few moments. When walking to school, which wasn’t far, I would have to stop up to ten times to rest, as it felt as though my muscles were fizzing like a shaken up bottle of pop. Amazingly, I could run long distances, but not walk very far. Aged 10, my teachers noticed I was struggling in school. When teachers would dictate in class, I would be a few sentences behind because my hands were too slow to keep up. My friends often had to help write for me. I also remember when I was 11, whilst doing PE, I could not jump at all. I felt confused as I was watching the rest of the class jumping and doing hops, skips and star jumps, while I could not. Mymuscles could not ‘spring’. A few weeks later, I was able to jump again and I spent the whole lesson just jumping because I could. This was the last time I jumped. Whilst this was happening, I was being seen by a doctor at the local hospital who had been my brother’s doctor too. He had implied that my walking and jumping issues may have been my way of trying to gain attention, because when he asked me to walk up and down his small office to show him how I had to stop to rest, I could walk seemingly fine. It was such a short distance though, and I did not advise him of this * Faye Wylie leighnetwork@hotmail.co.uk