Brave teenager marks special day at Trafford Town Hall

A brave teenager with a rare genetic disorder was invited to Trafford Town Hall to mark a special day in the medical calendar.

Oliver Bedford-Gay, who suffers from fibrodysplasia ossificans progressiva or FOP, was invited to the Town Hall to witness the building being lit up blue for Rare Disease Day on February 28, 2022.

His parents Helen and Chris run the national charity FOP Friends in Sale which helps research into a treatment and a cure for FOP, raises awareness of the disease to prevent misdiagnosis, and supports people and families affected by the cruel illness.  They set the charity up when Oliver was diagnosed with the condition at just 13 months old and there was no UK charity at the time for families.

FOP Friends decided to mark Rare Disease Day, which began in 2008, to raise awareness for the over 300 million people worldwide living with a rare disease.

Helen said:

“Rare Disease Day is very important to us in terms of raising awareness around the world for people living with a rare disease. Whilst FOP is rare, affecting around one in a million people and only 60 people in the UK, we know that many people are living with rare diseases around the UK and the world.  We are proud to stand with other communities on this special day.  I would like to thank everyone for their support including Cllr Amy Whyte and Trafford Council.”

Cllr Cath Hynes, Deputy Leader of the Council and Executive Member for Children’s Services, met up with Oliver and his family at the event. Cllr Hynes said:

“We are delighted to support such an important day and help raise awareness for the millions of people worldwide living with a rare disease. It was fantastic to meet Oliver on this special day. He is an extremely brave boy – a pure inspiration.”

To learn more about FOP and the charity please go to www.fopfriends.com.

Posted on Wednesday 2nd March 2022