An Evesham landmark will be lit up pink, blue and lime green for a very special reason.
At the end of this month, the Bell Tower in Abbey Park will be illuminated to raise awareness of Rare Disease Day.
In the UK there are more than 3.5 million people living with a rare disease.
Among them is Evesham resident Ailla Richards who, in 2019, was diagnosed with CASK gene disorder when she was just three years old.
It was discovered after the family took part in a British initiative to sequence and study health and disease to provide answers to those suffering from a ‘syndrome without a name’.
Now aged six, Ailla is one of only 250 people in the world affected by this disease which can have severe life-limiting consequences.
Emily Richards, Ailla’s mother, said: “My daughter suffers from an ultra-rare genetic disease, and so this day means a lot to my family, and I’m sure other families in Evesham too.
“I often see Evesham Abbey lit up beautifully in remembrance and it makes me stop and think of others. I hope that other people will do the same on February 28.
“I want to thank All Saints Church for supporting this very worthwhile cause.”
The lighting of Evesham Bell Tower will form part of a global ‘Chain of Lights’ taking place on February 28, Rare Disease Day.
Thousands of events including illuminations, fundraisers, sporting events, scientific conferences, art exhibitions and policy events will be taking place across more than 100 countries.
It is hoped that this will raise awareness of rare diseases and in turn help with diagnosis and access to treatments as well as improve inequality and isolation.
The Vicar of Evesham, the Revd Andrew Spurr, said: “Advances in genetic technology mean that we can now identify an increasing number of conditions which we could only dream of even ten years ago.
"The funding for this kind of research increasingly falls to charitable donations.
"We at the parish church are delighted to be able to raise the profile of Rare Disease Day, a sign of hope for families whose loved ones will benefit from the work it makes possible.”
Residents are invited to light or decorate their home at 7pm on February 28, take a photo and post it on social media using the hashtag, #LightUpForRare.
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