‘Phenomenon’ 18-year-old, who unexpectedly lost sight to rare disease aged 16, is set to run first marathon

An 18-year-old from Northampton, who unexpectedly lost her sight to a rare disease last year at the age of 16, is set to run her first marathon.

Lily Mumford and her father Andrew will be running the Loch Ness Marathon next Sunday (October 8), to raise money for a charity supporting those who have been on a similar journey to Lily.

She lost her sight suddenly last April to Leber Hereditary Optic Neuropathy (LHON), a rare disease.

Lily coped brilliantly, even sitting her GCSEs a few weeks after going blind. She has fought hard, continued her studies and plans to go to university next year.

Lily’s vision began to go blurry before Easter last year and she visited the opticians to get her sight checked out.

It was only when she had blood tests at the hospital that it was determined to be a hereditary condition – and then began accessing specialist help and care as her sight continued to decline.

Andrew described Lily’s school as “wonderful” in the way they accommodated her to sit her GCSE exams.

Despite not being able to revise properly and having to learn in a new way, Lily got a “fantastic” set of results and began her A Levels last September.

It was in June last year that she was officially registered as blind, and Lily learned to start walking with a cane and how to be independently mobile.

“Lily is a phenomenon,” said Andrew. “She hasn’t hidden away from her new challenge and keeps fighting on. She is currently in her second year of A Levels and planning university.

“We’re immensely proud of how she has fought on. We can’t put into words how proud we are as parents of her resilience.”

Running has always been a big part of Lily’s life, but became a major release since losing her vision – described by her father as a “whole new ambition”.

The plan, before Lily’s sight loss, was that she would run a marathon when she turned 18 and she was determined to make that a reality.

The Loch Ness Marathon was one of the first she could register for and with the help of some good family friends who will narrate the route as she goes, Lily is all set for next Sunday.

When asked how Lily is feeling ahead of the marathon, Andrew said: “She’s nervous and excited. She’s looking forward to getting up to the Loch Ness and getting stuck in.

“Running has allowed her to get some focus and normality back.”

Lily is fundraising for the LHON Society, supporting others on their journey with Leber Hereditary Optic Neuropathy.

As a rare disease, Andrew says the charity does not have many resources – but Lily’s fundraising will help provide information podcast packs to those newly diagnosed with the condition.

More than £5,000 has already been raised, which Andrew says Lily is “over the moon” and “incredibly proud” of.

To make a donation ahead of Lily’s marathon run in aid of the LHON Society, visit her fundraising page here.