Awareness for rare diseases promoted by West Norfolk parents whose 11-year-old son is affected

The parents of a West Norfolk child with a rare genetic disorder are helping to raise awareness of relatively unknown diseases.

Narborough based Gilda and Adrian Fawkes’ 11-year-old son George has Floating-Harbor syndrome which involves short stature and delayed bone age.

A new initiative has been launched to help connect parents like the Fawkes’ with communities and professionals supporting the education of children with rare diseases.

As a researcher at Cambridge University, Adrian will be kicking off activities by showcasing stories from education settings around the world to highlight rare diseases.

According to research, around 30 per cent of children with a rare disease will not survive beyond their fifth birthday.

Rare Disease Day, which is the last day of February each year, aims to improve public knowledge.

Running since 2008, the day has seen thousands of activities take place throughout the world.

A campaign by Rare Disease Day has described the day as “a rare day to put rare diseases in the spotlight”.

After being “so touched” by the response to the media’s coverage of George’s ‘where are you Kangaroo’ appeal, Gilda and Adrian turned their attention to the initiative.

George lost his toy kangaroo on a train between Bath and Bristol, prompting a national and international appeal to reunite him with his favourite toy.

He has feeding difficulties so has been learning to eat and read.

Ms Fawkes said: “Because of George’s condition, we travel around a lot as he is seen by different children’s hospitals.”