Written by on 25th September 2023

Pontypridd Member of Parliament, Alex Davies-Jones, has worked with local residents in her area impacted by craniosynostosis to raise awareness of this rare condition.

As September commemorates Craniosynostosis Awareness month, this evening, Pontypridd Museum will be lit up in purple to commemorate this rare condition where a baby’s skull does not grow properly and their head becomes an unusual shape.

Alex Davies-Jones MP has been the Labour Member of Parliament for Pontypridd and Taff Ely since 2019. She was contacted by local resident, Ms Aimee Spencer, whose six month old daughter Miley has been impacted by the condition.

At the light-up, Alex Davies-Jones MP said:

“I was contacted by Aimee and her family and as soon as I read her email I was keen to support the campaign. Craniosynostosis is a condition that not many people will have heard of, yet it is estimated that craniosynostosis affects between 1 in 1,800 and 1 in 2,000 babies in the UK.

“As soon as I heard from Aimee I was keen to help and to lend my support. My team have worked hard along with staff at Pontypridd Town Council to make tonight’s moving display happen – and I hope it will inspire people locally to ask questions about this relatively common condition.

“It has been a privilege to support the family during this difficult time, and I will continue to follow Miley’s progress in the weeks and months to come, too.”

Aimee Spencer, mother of a daughter impacted by craniosynostosis, said:

“In May, we got the news we as a family were all dreading, that my six month old daughter Miley would need surgery to treat her sagittal craniosynostosis. Since then I have found great support and comfort from an online group known as Cranio Ribbons UK.

“To commemorate Craniosynostosis Awareness Month, many buildings across the UK were being lit up to raise awareness – and I knew I wanted to do the same here in Pontypridd.

Alex Davies-Jones MP and her team worked with me to make this happen and I’m so pleased to see Pontypridd Museum shining in purple this evening.

“Not enough people know about craniosynostosis so I hope this will start the conversation going, so that other parents and families impacted will feel they are able to seek support too.”

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