<p>Sebby was born on the 19/9/11. Initially we thought he was slow to develop. He took a long time to be able to sit up unaided, roll over & developed plagiocephaly.&nbsp;</p><p>Doctors performed an MRI. They did identify an issue, but we didn’t worry as we were told he looked well. But at a re-scan 6 months later we were advised of suspected Mitochondrial Disease. We hadn't heard of it or its devastating implications. A disease that is life limiting & has no cure. &nbsp;&nbsp;</p><p>At the time Sebby was still progressing with physio so we thought they might be wrong, but over time, he developed epilepsy & cardio myopathy. He began to regress, but to us Sebby was Sebby. He was such a sweetie. His smile would light up a room, his thick dark hair & red glasses made him stand out in a crowd. Everyone who had the chance to meet him remembers him, he gave the best cuddles.&nbsp;</p><p>Sebby became unwell on the 25/12/16 & on 23/1/17 surrounded by his family & in his mummy’s arms we had to say good-bye. &nbsp;No parent should have to say goodbye to their child.&nbsp;</p><p>This is why we have decided to continue to support The Lily Foundation to help them develop treatments &, in the future, a cure. &nbsp;We would like to say a huge thank you to everyone who has taken part in an event for Sebby or who has donated. The Lily Foundation have been a huge support to us in many ways & we want to help more. &nbsp;&nbsp;&nbsp;</p><p>Sebby is a huge part of our lives & even the youngest members of our family know about him as we keep Sebbys memory alive. His biggest fan is his big brother who misses him immensely & tells everyone with pride about his beautiful brother. The last year has shown how supportive & generous family & friends are. &nbsp;&nbsp;</p><p>Aidan, Marley & I are truly thankful to you all. If you would like more information on the condition, please visit The Lily Foundation's website <a href="http://www.thelilyfoundation.org.uk/">http://www.thelilyfoundation.org.uk/</a> &nbsp;&nbsp;&nbsp;&nbsp;</p>