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We are extremely sad to inform our members of the passing of our former trustee and dear friend Ffion Miles.

Many will remember Ffion for her fun nature, passion for music and fierce intelligence. She was a real people person with lots of friends, including CHECT Members, members with whom she enjoyed our Beyond Rb outings, member’s weekends and developed some very special individual friendships. We are sure that lots of you will remember Ffion performing in the ‘Rb band’ as lead singer at CHECT members’ weekends.

Ffion was diagnosed with Rb as a baby which left her with a little vision in just one of her eyes. However, she never let her Rb or visual impairment hold her back and achieved an absolutely incredible amount in her lifetime. A diagnosis of osteosarcoma (bone cancer) in her knee in her teenage years was another setback, but thankfully it wasn’t long before she was living life to the full again.

Ffion graduated with a Law degree from Cardiff Law School before gaining a master’s degree in Politics. She soon landed a role at the BBC between 2008 and 2016 as their Ability Rep for Wales. She loved to travel around the world and had a passion for rugby too, which is why in 2019 she embarked on a solo trip to Australia and Tasmania where she was interviewed to promote access and inclusion for disabled supporters. Ffion travelled to Canada with The Welsh Choir using her beautiful singing voice. She has passed on her passion for singing to her young nephew.

As CHECT was a charity close to her heart, between 2010 and 2016 she volunteered her time as one of our trustees, providing invaluable advice and guidance to our Board. She was also a treasured member of our ‘Beyond Rb Group’ and the wider Rb community.

Ffion continued her career at the BBC becoming a researcher for shows such as Bargain Hunt, the One Show and Casualty. She was also an Assistant Producer for BBC Wales and a Feature Writer for the BBC’s Welsh language news service and Radio Wales/Radio Cymru News.  Somehow Ffion even found time to sing live on the rugby pitch before a Wales game!! The last live rugby match she attended was with her parents, when they saw Cardiff play.

Throughout her life Ffion was passionate about the rights of people with a disability, particularly visual Impairment. She also advocated for children with a visual impairment to have access to braille or other technology that would support their learning and leisure.

Ffion was a wonderful daughter and devoted aunt. She had friends everywhere! They would always comment what a fantastic friend she was and how she always had something interesting and exciting to talk about. She was a brilliant storyteller and shared her love of books with her niece and nephew, with whom she had a close relationship. As well as rugby and music, Ffion loved all things Harry Potter, the Pointless TV show (which she was very good at!) The Archers, Anne of Green Gables, and much more.

Ffion was admitted to a hospital close to her family in Wales for six weeks over Christmas and the New Year where unfortunately her condition deteriorated and palliative care was organised for her in her home. Ffion spent her last days at home wither family and very sadly died on January 17th.

Ffion’s life was celebrated with a small funeral, due to COVID restrictions, but there were over 100 people outside the church who came to pay their respects.

We shall miss you Ffion, your tireless energy and your personal, informed insight which has helped guide the charity’s work.

The CHECT Team

Ffion standing next to a  waterfall
Ffion on a boat in the ocean, smiling and standing with her arms stretched outwards towards the sky.