Bolton Town Hall to be lit for awareness of rare condition

Bolton Town Hall to be lit for awareness of rare condition


A Bolton mother has voiced her pride as Bolton Town Hall is set to be lit up in purple for awareness of a rare condition that her daughter has.

The rare genetic condition Cornelia de Lang Syndrome (CdLS) is something which is close to the heart of Anne Dewhurst, 53, from Westhoughton.

Her 12-year-old daughter, Hannah, has suffered from the little known condition since birth, which has given her health issues such as a cleft palate, a heart condition and sensory issues as well as that she is non-verbal.

Anne said: “It will be the second international CdLS Awareness Day on Saturday (May 13). There are children and adults out there who don’t have a diagnosis.

Bolton Town hall will be lit up at 6pm on Saturday, May 13, for CdLS

“Diagnosis of CdLS is helped even by a passive social media campaign.

“A mum in Australia who has a baby with CdLS came across a picture of Hannah from one of my posts and realised that her child might have it.”

Anne, who runs a blog about her family’s life with CdLS called My Kid Loves Broccoli, added: “One of the reasons why I started blogging is that when my girl was born, there wasn’t much on the internet, if anything.

“Now, more and more parents are sharing their lives on social media, that makes a difference.”

The council will be contributing to making a difference by lighting up the town hall purple at 6pm tonight, Saturday, after a request by Anne.

She said: “I just emailed (CDR) of council and shared information trying to raise awareness.

“He said yes and liaised with a PA and PR team.”

READ: Family overwhelmed as readers give for Hannah

Hannah has appeared in The Bolton News before, when readers raised more than £1,200 for her treatment as a toddler, which helped her overcome some of the issues caused by the condition.

On being asked about the lighting, a spokesperson for Bolton Council said: “We are happy to light up Bolton Town Hall in purple on Saturday night to raise awareness of Cornelia de Lange syndrome.

“The request came from one of our local residents and we are pleased to show our support to everyone living with this rare genetic condition.”

Cornelia de Lange Syndrome 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.

The CdLS Foundation is aware of more than 500 children and adults with the syndrome in the UK and Ireland, and more than 4,000 worldwide.

You can visit Anne’s blog at https://mykidlovesbroccoli.wordpress.com.

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