Phelan-McDermid Syndrome Awareness Day: Portsmouth family delighted that Spinnaker Tower will turn green in support of son’s rare genetic condition

Saturday, October 22 is International Phelan-McDermid Syndrome Awareness Day – a day that is close to the hearts of Claire and David Galway, as their five-year-old son Elliot has the rare syndrome, which only affects about 250 people in the UK.

That night, the Spinnaker Tower – along with landmarks across the world – will be lit green help increase public recognition.

Families will help light bridges, landmarks, homes, and entire neighbourhoods in green, and Claire, David and Elliot, from Horndean, will be at Gunwharf Quays that night.

As well as the syndrome, Elliot is also autistic, and has ADHD and epilepsy. Due to his condition, he is the size of an eight-year-old, despite being only five-and-a-half, and has the cognitive level of a nine-month-old.

Claire said: ‘It is a big challenge, he’s affected quite severely cognitively, his cognition is very low, and teamed with that he’s very physically mobile. He’s very large for his age, he’s in eight to nine-year-old clothing and he’s entirely non-verbal as well. He’s very active, and also high sensory seeking. It can be quite challenging day-to-day.’

‘It’s just a day a year, which people can dedicate their time to understanding it a bit more, just to get people on our side a bit more and that awareness amongst the health professionals.’

Claire and David are keen to improve understanding of the issue. In February the family called for Queen Alexandra Hospital to install a changing facility for people with disabilities after a ‘difficult’ incident with Elliot after he suffered an episode of incontinence during one of his regular visits.

‘We were told at the beginning of this year that works would be started and completed by the end of this year,’ said Claire.

‘Everything is a fight, even with a diagnosis, a lot of parents struggle because it’s so rare that maybe they can’t find a name for it.’

‘I’m glad [Spinnaker] have taken it on board, if we can make sure that people are aware of it beforehand and get as many people there as we can, the more people that know the better,’ she added.