Our little man Lucas was born on 16 September 2005 weighing 3lb 14oz, He appeared ‘normal’ but very small for full term. He progressed slightly behind the ‘normal’ milestones, on 17 August 2006 he suffered 2 heart attacks and we were told there was nothing else they could do, we went to say good bye and for some strange reason his pulse improved and we where whisked to Pendlebury Children's Hospital where he spent 10 days in ICU on a ventilator in an induced coma. We where told he would never be as he was and expect the worst, he came back to us virtually the same way and proved everyone wrong. This happened in the October too. Just after Christmas he was diagnosed with Leighs Disease Pyruvate Dehydrogenase . A muscle biopsy was done but came back clear, as there are many variants of this disease they didn't do a particular one of them as he had normal brain fluid and in general could not be, but as a last resort they did and this came back positiveAt this point he still had most oral foods and milk and tube fed when unwell after ICU but as time went on this changed and we relied mainly on the NG tube and some oral foods.  He was then ventilated 6 times between Jan 07-April 07 each time he ‘went down’ as we called it was the same way but as we got more used to it generally we where in hospital before this happened. He was given 8 medicines in a morning 2 in the afternoon and the same 8 at bedtime. We then were in and out of hospital in general due him being unwell and because he was so unstable we never knew when he would need ventilating again. The next time he ‘went down’ was the August 07. At age 2 he could say around 10 words, do simple puzzles, shape sorting, draw pictures, feed himself, he could commando crawl but as he got bigger this became less and less, his sitting was hit and miss especially after ICU and became quite wobbly, he was always a very happy and smiling little boy even with the tubes up his nose on the ventilator and as far as his disability affected him it was his gross motor that was affected the most, he knew exactly what he wanted and how to get it, and when sat in his buggy you would never know anything was wrong. He had a portacath fitted early on as his veins weren't very good and helped loads as getting blood/giving IVs was very hard without it, he then had Baird button (like a mickey button) inserted in the August 07 which caused many problems with leaking. He celebrated his 2nd birthday on 16th September 2007 and after a trip to Longleat to see Postman Pat (his favoritehis face started twitching (this was new) and we packed up mega early in the morning to come home, at which point we ended up in Glocester hospital for a week waiting for an ambulance to take us home as he was ok but not quite up to the journey home, apart from this everything was going ok. Then on the 18th October i knew he wasn't right and during the early hours on 19th October 2007 he passed away in his own bed. We miss him everyday and not a day goes by when we don't think about him. He now has two sisters Heidi age 4 and Erin 12 weeks who are both not affected and where tested at 11 weeks during pregnancy.