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.

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 and has no cure.

At the time Sebby was still progressing with physio so we thought they might be wrong, but over time, he developed epilepsy and 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.

Sebby became unwell on the 25/12/16 & on 23/1/17 surrounded by his family & in his mummy arms we had to say good-bye. No parent should have to say goodbye to their child. This is why we have decided to continue to support The Lily Foundation to help them develop treatments & in the future, a cure. 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.

Sebby is a huge part of our lives & even the youngest members of our family know about him as we keep Sebby's 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.

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.