Family of little boy with Fragile X helps see Sunderland lit up raise awareness of rare condition

Five year-old George Robinson lives in Washington with paretns Kay Spencer and Chris Robinson, and big sister Stevie, eight.

George suffers from Fragile X Syndrome (FXS), a genetic condition affecting around one in 4,000 males and one in 6,000 females. It causes difficulties with learning, as well as social, language, attentional, emotional and behavioural problems.

It is the most common inherited cause of learning disability, yet remains relatively unknown.

Kay, along with the Fragile X Society charity, is doing her bit to raise that crucial awareness by having four Sunderland landmarks lit in the charity’s colour, blue, on Tuesday, October 10 which is International Fragile X Awareness Day.

With Sunderland City Council and National Trust backing, Penshaw Monument, Keel Square, the Northern Spire and Fulwell Mill will be awash with blue that evening.

George was diagnosed with the condition, which his family had previously not heard of, in August 2020. Tests showed that Kay, her mother Janice Robson and Stevie are all carriers. Stevie, a Lambton Primary School pupil, is also autistic.

Kay said: “It’s not specifically about our story. It’s really about putting the spotlight on what the charity does, because they’re amazing.

“George is five now and I always refer to him as my big baby, because that’s essentially what he is. He’s at the toddler stage now where he’s trying to get in drawers and we’re putting child locks on things.

“It’s very similar to autism. He’s non-verbal. He doesn’t speak. He makes very little eye contact, so we can’t use Makaton (a type of sign language), therefore he gets very frustrated and worked up because he can’t tell us what he wants.

“He can be quite unsteady on his feet, so we have to keep an eye on him.

“At the same time, he’s a very loving little boy. He loves his cuddles and he’s very sociable. He likes people being around him.

“He focuses on the things he likes and he likes to repeat behaviour, so he has Peppa Pig on a loop at home. It’s a comfort thing.

For more information, visit www.fragilex.org.uk.