Luton schoolgirl features in a charity film which is up for national award

Lily Harriss, of Limbury, has a rare disease that is sadly life-shortening, and Action Medical Research is funding the research to find out more about the disease, and work towards developing treatments.

Lily’s parents Simon and Samantha worked with the charity to create a moving film that shows the impact of a rare, life-shortening disease, beta-propeller protein-associated neurodegeneration (BPAN). It is a disorder that damages the nervous system and gradually gets worse.

The three minute film highlights the work taking place at University College London, where scientists funded by Action and the British Pardiatric Neurology Association are dedicated to finding out more about the disease.

Lily’s dad Simon said: “When BPAN was first mentioned, Lily was only five. We were just totally devastated. Lily has severe global developmental delay. She can point to things she wants, she uses a little sign language and she can say a few words, like mummy, daddy, hello and goodbye. And she is now a wheelchair user.”

Sadly, in the coming years Lily’s health will deteriorate as teenagers and young people with BPAN develop abnormal muscle tone, along with symptoms of Parkinson’s disease and dementia.

Despite everything, Lily, who goes to Lady Zia Wernher special school, is a happy girl who, Simon says, only knows love.

He said: “Lily is a happy-go-lucky little girl who loves swimming and has recently started to sing. We’re giving her the best time we can while she’s here.

“And we are so proud of the fact that, by taking part in this research – and this film – Lily is helping other children in the future.”

The Charity Film Awards were created to celebrate the success of film in fundraising, to increase exposure of charity films and to encourage donations for good causes.

Voting is open from Saturday, October 27, to Saturday, December 15, visit www.charityfilmawards.com to vote.