The video of a song written by a very high profile American singer/songwriter for her English friend living with facioscapulohumeral muscular dystrophy (FSHD) is being launched on FSHD World Awareness Day (Thursday 20 June).
Hilary Roberts created Fight to the Other Side after her friend Annie Blake, 57, was diagnosed with FSHD two years ago. Annie began to feel that her condition was making her a burden on her friends and Kevin, the childhood sweetheart who she married. She attempted suicide numerous times, but says the song has helped her turn things around.
Annie, a teacher at Brockenhurst College, said:
“I was incredibly moved by the gift of this song and its beautiful music video which has given me the strength to fight. It’s incredibly uplifting and I want to share its message of hope with anyone struggling with a life-changing event.”
Testament to the incredible friendship between the two women, the highly emotive song tells her: ‘now’s too soon for goodbyes,’ and it asks her to ‘hold on and let me love you’, and it tells her how brightly her light still shines.
Globally successful singer Pixie Lott, and a close friend of Hilary Roberts said: “Of course, I am totally aware of the incredible power there is in music to turn sadness into joy. Hilary has used her amazing talent to offer Annie, and others in similar situations the strength and hope to come through the most difficult times and to ‘fight to the other side.”
Muscular Dystrophy UK: supporting Annie and others with FSHD
Muscular Dystrophy UK has been supporting Annie since her diagnosis. Annie immediately contacted the charity’s helpline after getting the news when she had no understanding of the condition and was very shocked and frightened. “They were fantastic,” she said. “They supported me so well in those first few frightening weeks.”
Annie also successfully applied for a grant from MDUK’s Joseph Patrick Trust to help towards the cost of a Powerchair.
In the UK, 2,000 – 2,500 people have FSHD and several generations of a family are often affected by the condition. Annie and Kevin have a son Peter who has the condition, and a granddaughter, Edie, who may also have FSHD. Find out more about the condition.
The music video is to be released on FSHD World Awareness Day. Watch it here.
The audio is available on Spotify here
And on iTunes.
If you need support or advice about FSHD or any other type of muscle-wasting condition, you can call the MDUK Freephone helpline on 0800 652 6352 or email firstname.lastname@example.org