Phelan-McDermid Syndrome Awareness Day: Spinnaker Tower dazzles night sky in green to highlight cause close to Portsmouth family's hearts

Vivid colours radiated from the monument – as well as landmarks worldwide – for Phelan-McDermid Syndrome (PMS) Awareness Day.

The rare genetic condition affects Elliot Galway, of Horndean, impacting his cognitive levels and leaving him non-verbal.

His family were delighted their son’s condition was being highlighted, and to meet with other families affected by PMS.

Mum Claire Galway, 36, told The News: ‘It’s a really important step to highlighting Elliot’s syndrome on the awareness day.

‘It brings lots of people together, including us and a family from Worthing which we met for the first time.

‘It’s a great way to connect with other families in a similar position.’

PMS means Elliot is hyper mobile compared to other children.

He is the size of an eight-year-old, despite being five, and regularly suffers from seizures.

Elliot has also been diagnosed with autism, ADHD, and epilepsy.

Supporters of charity PMSF UK – which help PMS families with specialised equipment, emotional support and hold national get-togethers – displayed a banner yesterday telling passers-by about the condition.

Elliot’s father David Galway, of Gosport, said the green lightshow also highlights other rare genetic disorders.

He added: ‘I don’t think people understand and appreciate the challenges and the impact they have on families, so it’s nice to shout about it and get everything talking.

‘When speaking with families with kids with PMS, they understand it and get it, so it’s nice to have frank conversations.’

The Galway family, including seven-week-old Robyn, are also supported by Unique.

Through the charity, Elliot has been able to go on play groups with children that have rare genetic conditions.

Mr Galway, 37, said it was a great environment for his son’s fun-loving energy and allows him to be himself.

He hopes events such as PMS Awareness Day makes being around those with disabilities more accepted.

‘It’s about people being comfortable around disabilities and people with genetic syndromes,’ he added.

Another family that was at the Spinnaker Tower was the Taylor family from Worthing.

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.

Ms Farrell 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.

The 33-year-old 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.

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‘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 Sienna, five, is fascinated by, and meeting other PMS families for the first time.

Ms Farrell 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,’ Ms Farrell said.

‘Willow is sprinkled with a bit of magic dust – lighting up the faces of anyone she meets.’