Disabled Leeds girl locked in a body that doesn't work to open singing show as mum describes 'off the scale' pride

Five-year-old Tilly West, who suffers from Rett Syndrome, cannot stand upright or take a step without the aid of her walker and relies upon an eye gaze device to communicate.

The Leeds youngster also suffers from scoliosis, which has caused a 73 degrees curvature of the spine.

"Tilly can't talk, she can't walk, she can't take any steps without her walker, she can't transition from one posture to another, she can't user her hands and she can't feed herself," mum Dolores Cowburn, told the YEP.

"She needs 24 hour care and can't do a single thing for herself but intellectually there is nothing to suggest she isn't like any other child her age. She's just locked into a body that doesn't work."

Despite the rare condition which is expected to only get worse as she gets older, Tilly has continued to flourish and now attends mainstream school.

With the help of her eye gaze device which helps her communicate, in a way mum Dolores describes as similar to that of famed physicist Stephen Hawking, Tilly is now able to join in with other children her age.

"She's now in a mainstream school with other little boys and girls, she uses this device and is doing so so well and is above average in reading and writing." Dolores said.

Tilly now attends a singing club after school on a Monday with other youngsters aged between 4-10 years old.

Run by professional singer Melody Reed, Inspiring voices Music Box creates opportunities for children and adults who have a passion to sing and perform.

"Tilly joined us a couple of months ago and the kids just took her under their wing straight away. They just see Tilly as Tilly and that there's nothing different to her from the other children apart from that she can't speak to them," Melody said.

"As soon as Tilly joined we've been practicing a play so she has joined straight in with the other children, straight in the deep end and she just loves listening to them singing. At the last rehearsal she just had the biggest smile on her face."

The children will be performing Pandora's Box next Monday and Tilly, using her eye gaze device, has been selected along with another child to open and close the show.

For parents Dolores and Rob watching Tilly fall in love with singing class and fit right in with the other children they hope it can show other parents who suffer a devastating diagnosis that there is still hope.

"She just loves it. We were worried that she would be tired after school but she isn't. She goes in, the other little girls and boys take her by the hand, bring her into the class and she sings with them," Dolores explained.

"The acceptance of the other children to just see Tilly. They don't see the wheelchair or the list of symptoms, they just see Tilly for who she is and have welcomed her into their singing group.

"She's part of something with her peers that any five and a half year old should be able to access and we hope that this can show other parents that when you get a devastating diagnosis that there is hope and that if you let people meet them at their level then anything is possible."

Tilly has always had a love of music with mum Dolores explaining that the youngster is a particularly big fan of Taylor Swift.

"Sometimes Tilly can get really agitated, really upset and frustrated and you don't know what's wrong but if you put Taylor Swift on she calms right down, It's like a switch goes and she's a different child. It's just her all time favourite thing." she added.