Miraculous breakthrough for Francesca Adam-Smith, girl with rare disorder that leaves her mute
- A young girl with a rare disorder which leaves her unable to speak has finally said 'I love you' to her mother.
Francesca Adam-Smith, who celebrated her 10th birthday this week, has spent her life desperately trying to communicate with mother Rachel and, until now, has only managed to make a few sounds.
But although miraculous, the latest breakthrough is only a tiny step towards full speech.
Scroll down to hear Francesca say 'I love you'...
'I love you': Francesca Adam-Smith, who celebrated her 10th birthday this week, has spent her life desperately trying to communicate with mother Rachel and, until now, has only managed to make a few sounds
As a baby: Francesca¿s condition, which is so complicated there is no other known case of it in the UK, affects her movement and co-ordination but until now, it has rendered her almost entirely mute
And now a specialist school that has seen the footage of Francesca's attempts has thrown her a lifeline by promising they could have her talking properly within a year.
But the school fees are £60,000 and, despite Francesca’s local education provider recognising her urgent need, she has been turned down for funding.
Ms Adam-Smith said the family had been left 'completely crushed' at the decision and she has now launched a fundraising drive to get her daughter enrolled while they appeal.
'Francesca tries so desperately to speak and gets increasingly frustrated and tearful when she can’t,' she said, speaking from their home in Wetherby, West Yorkshire.
'She is bright as a button but she is locked in her body and needs this intensive therapy to give her the best possible chance.
'She is a unique child and it is destroying me that she cannot reach her full potential.
'To hear her tell me she loves me took my breath away. I know she has so much more she wants to say.'
Water baby: A specialist school has thrown Francesca a lifeline by promising they could have her talking properly within a year - but its fees are £60,000
Despite Francesca's local education provider recognising her urgent need, she has been turned down for funding. Her mother is now trying to raise the money
Francesca’s condition, which is so complicated there is no other known case of it in the UK, affects her movement and co-ordination but until now, it has rendered her almost entirely mute.
Ms Adam-Smith, who gave up her career as a member of British Airways cabin crew to be her daughter’s full-time carer, said: 'I am not wealthy and I have nowhere to turn.
'Doctors tell me we need to act now if she is to be in with a chance but the appeal process could take months.
'If I can raise enough funds to give her just a year at this school it would make such a massive difference.'
Francesca was born prematurely after her mother was rushed to hospital with heart failure.
Since her birth she has suffered from pneumonia, septicemia, renal failure, high blood pressure and undergone operations on her stomach, hip and ears, nose and throat.
Her condition is genetic and caused by damage to chromosome 16 but, although doctors are not aware of another case like it, they are confident she could speak with the right help.
Francesca is currently a pupil at her local state school, Deighton Gates Primary School in Wetherby and receives just 30 minutes a week of speech therapy through the NHS.
With her grandfather: Francesca's condition is genetic and caused by damage to chromosome 16
Optimistic: Although doctors are not aware of another case like Francesca's, they are confident she could speak with the right help
But as a pupil of the specialist school - St Mary’s in Sussex - she would receive daily speech training as well as other therapies.
A spokeswoman for the school said it was confident it could to help Francesca.
She said: 'The gap between Francesca’s desire to communicate, her understanding of language and her ability to express this knowledge must be urgently addressed.
Ms Adam-Smith said she was desperate to give Francesca this chance.
'Although Francesca is challenged in so many ways she has a sparkle and intelligence that belies her disabilities,' she said. 'I need to be her voice right now but if we raise enough money to get her started at this new school, perhaps she will soon have a voice of her own.'
Steve Walker, deputy director for children’s services for Leeds City Council, which made the decision to reject Francesca’s application for educational funding, said it could not justify the expense despite admitting the new school would be appropriate.
He added: 'Unfortunately we only have a limited amount of money available to meet the needs of all our pupils with complex needs.
'We accept that St Mary’s would meet Francesca’s needs but unfortunately we do have to weigh up the cost to the public purse.'
Ms Adam-Smith’s appeal against the decision is ongoing.
For more information or to donate to Francesca’s school fund visit www.francescalilyfoundation.co.uk
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