Ramsgate Arts Primary goes green to highlight rare genetic condition

RAPS pupil Arthur with Early Years staff

Children at Ramsgate Arts Primary went green to help raise awareness of a rare genetic disorder.

The whole school wore coloured clothing in support of World CDG Day on May 16 – CDG stands for Congenital Disorders of Glycosylatation.

Head of School Nick Budge explained: “Arthur, one of our very young children at RAPS, has this very rare condition and we decided to support him and his family on raising the profile of CDG.”

Head of Early Years Foundation Studies Louise Chidwick-Day said the young pupils shared fabulous play activities with Arthur, all of which had a green theme. She added: “We had green water play, green paint, green slime, green tools in the construction areas and sand pits.”

The impact and effects of CDG were discussed with our children at all levels through the school with age-suitable information.

Mr Budge added: “Our children were proud to be helping raise awareness by wearing green clothing on May 16 which is the CDG international campaign day.

“Community spirit, teamwork and support of others is something our children learn about on their educational journey with us. It is important for our pupils to make their voices heard on a range of matters and this is just one example of them demonstrating social responsibility and awareness.”

Every case of CDG is very different and affects individuals very differently with muscle tone, growth, speech difficulties and eyesight problems among the issues.

There are only approximately 1,000 cases diagnosed worldwide, with around 70 in the UK. Through the determined effort of geneticists, researchers, clinicians and parents, CDG awareness has expanded greatly since it was first medically recognized in the 1980’s, creating opportunities for earlier and more accurate diagnosis and for proper categorization of the existing CDG subtypes.

CDG UK is the national charity supporting those affected by Congenital Disorders of Glycosylation (CDG). Partnered with the UK Genetic Disordered Partnership Network, it supports UK patients and families.

For more information go online to www.cdg-uk.org