Family marks milestone birthday for daughter with rare disease

A Leeds girl is this week celebrating a milestone birthday few doctors thought she would ever see.

- by Dennis Morton

On September 11, Zoe Lightfoot turned 10. She spent the day at West SILC, her school, before marking the occasion with family and friends at home.

Zoe was just two-and-a-half when she was diagnosed with infantile neuroaxonal dystrophy (INAD) - a rare, inherited degenerative condition that robs children of movement, speech and sight.

Most affected youngsters die between the ages of five and 10. Only a handful of children in the UK live with the disease.

A few months after her diagnosis in 2018, Zoe’s parents, Christine Hamshere and Steven Lightfoot, took her to America to take part in a drug trial.

They made four trips across the Atlantic, bringing the trial drug back to the UK for Zoe to take regularly.

Christine told the Yorkshire Evening Post: “And then that trial folded when they ran out of funds.