When Jayden was born it was quickly realised something wasn't right. He was very small, struggled to fed and didn't reach his milestones.

He was misdiagnosed several times and often went from bursts of energy to no energy. When he had bursts of energy professionals would suggest he was fine.

Eventually he was referred to the centre for life in Newcastle where his low mitochondria were detected. This allowed us to be referred to the Mito team in Newcastle, who are still trying to find the exact gene that causes Jayden's Mito.

Jayden suffers from Ataxia, neuropathy and retina pigmentation- often abbreviated NARP

He has pain and fatigue every day although some days are far worse than others.

Jayden loves music and Newcastle United. He never lets anything get in his way and is determined to not let his mitochondrial disease define him.

The Lily foundation have given us invaluable support & information and given us a community to belong and meet people in the same situation as us who just get it.