The 'amazing little princess' who can't see, walk, talk or feed herself – but stole the hearts of the X Factor audience with her smile
Tilly-May has a condition that means her brain didn't form properly. She is blind and has cerebral palsy and epilepsyDoctors don't expect her to survive childhoodThe family were offered a lifeline by Jessie May nurses, who give them respite one day a weekThey also helped mother Jenny cope with the knowledge Tilly-May will die early
18:01 GMT, 3 December 2012
The three finalists of The X Factor were chosen yesterday in another night of inflated egos and musical melodrama. But it was a six-year-old from Bristol who was the real star of the show.
Tilly-May Somerville featured on the results programme in a segment revealing the charity work that is supported by sales of the TV show's Christmas single.
The youngster suffers from a condition known as agenesis of the corpus callosum, which meant her brain didn't form properly and at six months she was diagnosed with cerebral palsy and epilepsy. Tilly-May is also blind and can't walk, talk or feed herself.
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A Jessie May nurse (left) helps Jenny Somerville look after her daughter Tilly-May
'We're just truly blessed': Jenny with Tilly-May
Yet despite all her medical issues, Tilly-May is full of smiles and is adored by her parents Jenny and Richard, as well as siblings Emily, 16, Ben, 14, and Dylan, four, from Whitchurch in Somerset.
'We live for every day. She's just so
precious to us all. We're just truly blessed that we were the ones
chosen to have our amazing little princess,' Mrs Somerville said.
Big sister Emily, added: 'Every day she fights for her life. She just inspires me.'
But the strain of caring for their daughter 24/7 at first put a huge strain on the couple, as Tilly-May struggled to get into a routine following her birth in May 2006.
'As soon as she finished eating she would fit and start to choke. Following that she would be violently sick. This was the case at every feeding time, Mrs Somerville said.
Under almost unbearable pressure, the mother-of-four developed post-natal depression following the birth of Dylan in 2008, and at one point things got so bad that Richard moved out for a spell.
But the family were offered a lifeline by the charity Together For Short Lives, who help fund numerous projects including the Jessie May nurses in Bristol.
Jenny and Richard on their wedding day. Jenny had two children from a previous marriage. Tilly-May (right) was their first child together, and her brain didn't fully form in the womb
Jenny struggled as Tillly-May would choke and vomit after feeds
The nurses provide respite care once a week, giving Jenny and Richard a much needed rest. They get the young girl dressed, sort out her medication and look after her while the family go out to the shops or for appointments.
Mrs Somerville said she had been reluctant at first to accept help as she was afraid of acknowledging that Tilly-May will probably die young.
But she said: 'On reflection, I wish I had accepted Jessie May's help earlier as I think they would have helped me cope better sooner.'
With their help she put together an end of life plan and funeral plan for Tilly-May, who is not expected to reach adulthood.
'It was the hardest think I've had to do in my entire life – planning a funeral for a little girl who is just full of life,' she told viewers of The X Factor.
'Jessie May put us on an even keal and helped us rationalise everything that was going on.'
At first Mrs Somerville wouldn't leave Tilly-May on her own with the nurses but over time she grew to trust them.
'Tily-May now really looks forward to having time with a Jessie May nurse,' she said.
'She knows their voices and loves having cuddles and kisses with them. I know Tilly-May is in good hands and I turst our Jessie May nurses implicity.'
Our little princess: Jenny and Ben with a smiling Tilly-May
How much I love my sister: Emily, Ben (left) and Dylan adore sibling Tilly-May
The nurses also provided emotional support for the parents, who still don't know what caused their daughter's condition.
'I know that I can talk to any of the nurses when I need to as well,' Mrs Somerville said.
'We treat them like an extended family.'
The nurses are provided by the Bristol-based charity Jessie May. They are one of the organisations helped by the umbrella charity Together For Short Lives who support and campaign for all children's hospice charities in the country.
This will be the second time the national charity will benefit from the profits of singles featuring the finalists from The X Factor. Almost 100,000 singles were sold last year. This year at least 1 from each CD and 20p for each download is expected to be donated to the fund.
The Somerville family enjoy a Jessie May children's party. They said the charity provided them with vital support
Jenny and Tilly-May enjoy a party together. Jenny said her daughter was 'precious'
Music mogul Simon Cowell, said: 'Together for Short Lives is such an inspiring and important charity for so many kids and their families who really need help and support.
'These hospices are really happy and positive places and are a complete lifeline for so many families. Having worked with this charity for many years I have been able to see first hand how they have impacted so many lives, and I’m delighted that The X Factor’s winner single sales will go directly to helping them.'
So, whether James Arthur, Christopher Maloney or Jahmene Douglas takes The X Factor crown – it will be families like the Somervilles who will be the real winners.
For more information about the Jessie May Trust visit www.jessiemay.org.uk and for Together for Short Lives visit www.togetherforshortlives.org.uk
VIDEO: Heartbreaking. Jenny describes preparing Tilly-May's end of life plan
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