Lily & Willow – Leigh’s Disease & Mitochondrial Complex 1 Deficiency

Lily is 12 years old and she loves music, chocolate and theme park rides! She is very chatty, caring and determined. Lily’s younger sister Willow is 7 years old and she loves chocolate, unicorns and lego! Willow is helpful, has a cheeky infectious laugh and enjoys nature programmes.

Leigh’s Disease

Lily has Leigh’s disease which affects her mitochondria. Mitochondria are found in most cells of the body and they are responsible for generating the energy to power the cells. Lily lost the ability to walk when she was 2.5 years old and she now uses a powered wheelchair around school and a manual wheelchchair at home. This enables her to be as independent as possible.

The Leigh’s disease is degenerative and there is no specific treatment or cure. We hope in the future other families will have speedier diagnosis of mitochondrial disease and treatments become available. Lily, Willow and family have benefited from support from The Lily Foundation and Leigh Network.

Mitochondrial Complex 1 Deficiency

Willow has mitochondrial complex 1 deficiency, which may cause more issues for her in the future, but at the moment there are no signs of Leigh’s disease like her sister.

Unique Feet

Lily was one of the founding members of the Cambridge Rare Disease Network’s Unique Feet group in 2016. Unique Feet began as a small group of four children living with a rare condition that met regularly for dance practice and performed at Sobi’s first ever Cambridge charity ball. The group also provided a space for families to connect and overcome the feelings of isolation that accompany raising a child with a rare condition.