Bolton’s town hall was lit up to raise awareness of a rare disease.
On Saturday, May 14, the town hall was lit up in purple to raise awareness for Cornelia de Lange Syndrome (CdLS) Awareness Day.
12-year-old Hannah Dewhurst has suffered from the condition since birth, which has given her health issues such as a cleft palate, a heart condition and sensory issues, as well as being non-verbal.
Her mother, Anne Dewhurst, 53, of Westhoughton, was the person who emailed the council and pushed through the town hall being lit up.
READ: Bolton Town Hall to be lit for awareness of rare condition
She spoke to The Bolton News about the importance of raising awareness, saying:
"It's important to educate the general public about diversity. It's sometimes really hard when out and about with a disabled child.
“For me, the starers are probably the worst! Plus, education may help towards a diagnosis."
"Contact - the organisation for disabled children and their families - shared a post on Facebook about awareness day on Saturday. The mum of a 17-year-old with CdLS commented on the post.
Anne added: "I then shared with her that I too had a child with the same condition. In all those years, she'd never come into contact with another CdLS parent and wasn't aware of the support and information available.
"Now she knows it's available and she knows she's not alone. If one medical professional had been aware of the CdLS Foundation, they could've signposted her years ago."
CdLS was named after a Dutch professor of paediatrics who worked in Amsterdam and was the first to identify the syndrome in 1933.
It is very difficult to be certain just how common the syndrome is, but it is probably somewhere around one in every 30,000 babies born.
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