Phelan-McDermid Syndrome Awareness Day: Spinnaker Tower dazzles night sky in green to highlight cause close to Worthing family's hearts
and live on Freeview channel 276
Vivid colours radiated from the monument – as well as landmarks worldwide – for Phelan-McDermid Syndrome (PMS) Awareness Day.
Sophie Farrell and Daniel Taylor’s daughter Willow, two, was diagnosed with PMS on October 21 last year – with the rest of the family being informed on awareness day.
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Hide AdThere are more than 300 families who are diagnosed with PMS in the UK and Ireland, and almost 3,000 registered cases worldwide.
Sophie described the diagnosis as ‘traumatic’, with her partner adding Willow’s condition means she has the mental age of seven months and is non-verbal.
Sophie said: “When you hear about the diagnosis, it hits you in the weeks and months to come. Each little attribute she has grows on you. It became real to us when she had a seizure a month afterwards, it lasted an hour and a half.”
The family thoroughly enjoyed seeing the Spinnaker Tower, which daughter Sienna, five, is fascinated by, and meeting other PMS families for the first time.
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Hide AdSophie is hoping more awareness will increase funding for PMS research, with the disease impacting roughly 300 people in the UK and 3,000 worldwide. She added the support they received on social media was ‘heart-warming’.
“Just seeing the other families and different age progressions helps us relate,” she said. “Willow is sprinkled with a bit of magic dust – lighting up the faces of anyone she meets.”