Sebby was born 19th September 2011, a beautiful, healthy little boy. For many months, we thought he was a normal little boy, but we soon realised he wasn’t reaching milestones.

After many appointments at the hospital, MRIs and muscle biopsies, we received confirmation that he had mitochondrial disease. This was absolutely devastating. We were given the diagnosis and allowed to walk straight out of the hospital with, what we would say, a health child and a disease we had never heard of. There was no advice on what was to happen next. After some research, we found The Lily Foundation. Since that day, we could not have been supported by a more fabulous team, another family for us.

Sebby developments did stop progressing and he started having seizures, losing body tone, strength and not being able to swallow safely, so life changed. Medicine and medical equipment became the new norm.

Sebbys 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 Christmas Day 2016 and on 23rd January 2017 surrounded by his family & in his mums arms, we had to say good-bye. No parent should have to say goodbye to their child. Sebby is a huge part of our lives and we have fundraised in his memory. Walks, runs, cycles and raffles to donate to the The Lily Foundation.

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.