Published: Friday, 13th Sep 2019

Bolton and Farnworth Town Halls will be lighting up green to raise awareness of a rare incurable disease and the devastating impact it has on its sufferers.

AmberThe buildings will be turning green as part of Global Mitochondrial Disease Awareness Week (September 14 to 21).
Monuments across the globe are joining in to raise awareness of the disease which can lead to muscle weakness, blindness and even death.
Bolton Town Hall will change colour in the evening, from September 15 to 19, after Bolton Council was approached by mother Paula Jones, from Kearsley.
Local councillors in Farnworth have also arranged for Farnworth Town Hall to turn green for the week..
Paula’s 29-year-old daughter Amber-Leigh suffers from the disease, which has left her wheelchair-bound and needing 24/7 care from her family.
Up until five years ago, former Canon Slade pupil and psychology graduate Amber was living a totally independent life and had a job helping other people with disabilities.
One day she suffered a massive seizure at work, which resulted in her staying for four months in Salford Royal Hospital before they discovered she had the disease.
Amber was diagnosed with POLG1 - a rare form of Mito – which has no treatment or cure. The disease has caused lesions on her brain which have taken away her ability to walk.
Mitochondrial disease occurs when the “mitochondria” which are the tiny organelles found in almost every cell of the body fail to produce enough energy for cell or organ function.
Paula said: “As a family we are very thankful that both town halls are being lit up to raise awareness of this particularly cruel and debilitating disease.
“In cases like Amber’s it creeps up from nowhere without any warning and takes away your independence.
“She has seizures daily which increase if she is overly tired and we look after her 24/7. Amber is housebound most of the time because of her lack of energy. 
“We now do everything for her so she can conserve her energy to enable her organs work more efficiently.”
Leader of Bolton Council, Cllr David Greenhalgh, added: “This is a devastating disease, which needs more awareness.
“When Paula approached us we were only too happy to help share her family’s story and we hope that turning the town hall green will help to highlight the issue.”
The family are keen to raise awareness and for donations to go to The Lily Foundation, which is the UK’s leading charity raising funds for research and support.
Peter Kay is also a proud supporter of the charity – in April 2018 all profits from his charity screenings of Car Share in Blackpool were donated to the foundation.
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