Wheelchair is brave Ruby's special Christmas present

7:10am Wednesday 24th December 2008

By Richard Vernalls

A BRAVE youngster battling a rare genetic disease will have a Christmas to remember after receiving £4,500 for a specially adapted wheelchair.

Two-year-old Ruby Crowther suffers with Type 2 Spinal Muscular Atrophy (SMA) which is causing the nerves controlling her muscles to die off, meaning she has never walked a single step in her young life.

Despite the condition, Ruby is a bright, happy child whose plight convinced Worcester Round Table to donate money for a new chair that will boost the youngster’s independence and quality of life.

Chairman Geoff Luxton said: “We aim to raise money locally to help local charities and support people in the Worcester area.

“We knew through our donation we could make life easier for Ruby with something tangible and it was a pleasure to help out.”

The Round Table heard of Ruby’s plight from Nicola Stobbs, a superviser at Rushwick pre-school, near Worcester, which the youngster attends during term- time, aided by a key worker.

Ruby’s mum Phillippa Crowther said: “She’s an extremely bright and a real character, just a joy to be around but her muscles are getting weaker, and lately there has been some wasting of her shoulders.

“She used to be able to hold her arms above her head but she just can’t do that now. The wheelchair will make a real difference to her mobility, so a big thanks to the Round Table.

“The school has also been absolutely brilliant and organised a sponsored walk that raised more than £1,500.”

Ruby's life-limiting condition is caused by a missing gene which stops production of a protein crucial to the motor neurons – the spinal nerves which send signals to the arms, legs, and other core muscles.

Pat Brill works with Ruby one-to-one as her pre-school key worker and said the youngster needed a lot of specialist equipment.

She said: “She’s brilliant, she loves the play house and she loves her Sylvanian Families but she needs the wheelchair and table-top play equipment. We are desperate for equipment so that’s why we raised the money.”

Phillippa, husband Nick, and six-year-old daughter Madeleine all help care for Ruby, with support from The Jennifer Trust for SMA (visit jtsma.org.uk).

Little medical help is available to Ruby and other sufferers other than physiotherapy, although British doctors are conducting research into treatments.