A LITTLE girl with a mysterious condition which has left her trapped in a silent world has inspired a fundraising song which could help towards finding a cure.
Sophie Spence relies on her big blue eyes and dazzling smile to let family and friends know how she feels.
She’s been that way since she was three, when a strange genetic disorder called Rett Syndrome suddenly emerged and robbed her ability to talk.
Now as scientists edge closer to what could be a miracle cure, her young friends and neighbours have rallied around and created a touching song inspired by her blue eyes and her heartbreaking plight.
It’s hoped the song – with moving lyrics that tell how ten-year-old Sophie can only express her feelings through her beautiful eyes – can raise funds to help in the search for what could be the world’s first cure for a neurological disorder.
Called Listen to My Eyes, the song has a haunting melody and words that sound like they are Sophie’s own. Not surprisingly, it brought her family to tears the first time they heard it.
Her mum, Jill, recalled: “I was in bits. It’s absolutely amazing.
“Scientists have already reversed this condition in mice. It’s incredible to think they could do that for children like Sophie. I hope it happens in her lifetime.”
Sophie, from Whitehill in Midlothian, was diagnosed with Rett Syndrome in 2008. Boys born with the defective gene usually don’t survive for long. It emerges out of the blue not long after girls start to walk and talk and puts their progress into reverse.
Around 2500 girls in the UK are affected. Most need 24-hour care for seizures, and breathing, eating and sleeping difficulties.
Rosie McLoughlin, sister of Coleen Rooney, wife of footballer Wayne, was born with Rett Syndrome. She died of the condition in 2008 aged just 14.
Jill, 39 and husband Alan, 43, were devastated when Sophie’s otherwise normal progress began to falter when she was a toddler.
Blood tests revealed Sophie, who had been a perfect and placid baby, had Rett Syndrome, a condition which means that while her brain functions normally, the rest of her body fails to respond, leaving her unable to walk, talk or live independently. Since then they have battled to raise awareness of the condition and the work of the charity dedicated to finding a cure, Reverse Retts.
Listen to My Eyes was written by friend Tommy Lawson who saw the frustration Sophie endured every time she tried to communicate.
It was recorded at Lasswade High School with former pupil Jillian Neil singing the lead vocals and backing from Bonnyrigg-based youth singing group Little Voices Big Stars.
Since going on sale on iTunes and Amazon, it has raised more than £2600.
Andy Stevenson, co-founder and trustee of Reverse Rett, said: “It is fantastic to see so many young people supporting our girls. Treatments are now on the horizon and we are committed to continuing to fund as much research into Rett Syndrome as we can.”
Yvonne Williams from Little Voices Big Stars said: “We are delighted to lend a hand to this very worthwhile cause and all the children had a ball in the studio.”
Jill, also mum to Harry, 14 and Sophie’s sisters Alexandra, five, and Scarlett, three – who both tested clear of the condition – said the recording had given her fresh hope. “I can’t wait for the day when I can hear her voice and I can explain to her what’s happened.”