The lack of protein means that the muscles are gradually wasting away and becoming weaker. This is a chronic condition with no cure.

Ruby has type II SMA which means that is unable to walk or to hold herself up without support. She is a wonderfully happy child. Her electric wheelchair gives her much needed independance but as she grows, her physical and support needs will change. Ruby starts school in September and is hoping to get a new wheelchair which will allow her to achieve day to day tasks with supported standing - such as washing her hands, digging in the garden and reaching work tops and desks on her own.  We are doing a series of fundraising events to try and raise £20,000 for this much needed wheelchair. Children with SMA develop scoliosis, this new chair will correct the spine which is moveable at the moment and support Rubys head to stop her falling forward

MOTORHOME, CARAVAN & CAMPING PLUS FAMILY FUN DAYS 10TH - 13TH SEPTEMBER 2010

Just to give you an update about the weekend.  Weather was a bit grim on Friday which put quite a few campers off but it picked up a bit Saturday and was fairly glorious all day Sunday.  The Mayor and Mayoress and their daughter opened the fun day on Saturday and the Mayor made a lovely speech before cutting the ribbon.  The Worcester News published some lovely photos of the days events in Mondays paper.  Saturday was a bit quiet but on Sunday all our family, friends and kind supporters turned up to ensure that we raised a good amount towards the wheelchair.  We totalled up £2,470.87 as an initial sum from the weekend and since then I have received £250.00 in donations and we are still getting percentages in from some of the stalls so it really was a fantastic result.  I am going to order the wheelchair on Monday and then it will take six weeks to make it as it is made to fit Ruby perfectly. Ruby had to visit the Royal Orthapaedic Hospital on Monday to have her spine x-rayed and the scoliosis is quite a bit worse than it was when last x-rayed a year ago.  The consultant wants us to consider surgery and will review her again in January.  The new wheelchair is made to correct her moveable scoliosis whilst she is sat in it so again it is such an important piece of equipment for her.  All of her family and Ruby herself would like to say a huge thank you to everyone who gave donations or who came and spent money on stalls and rides and those who made scones and cakes for us to sell in the cafe.  We are hearing of spin off events going on which have come about due to the fun weekend and again, we are all really touched at the generosity and general kindness shown around Ruby.  We hope you all enjoyed the fun day as much as Ruby did!!

The Golf Day at Bransford held on the 24th September was a great success, everyone who played had a great day and the total raised was £1,717.00, with the auction raising an amazing £600! so thankyou to everyone who came along on the day.

Update on where we are;

We ordered the wheelchair about 5 weeks ago with a deposit of £3,134.00.  We now have a delivery date of 3rd November 2010 where we will have to pay the balance of £7,311.00.  We have £4,139.00 in the bank and the round table have very kindly offered to give us a cheque for £2,500 towards the new chair which leaves a shortfall of £672.00 which my dad has kindly offered to pay.  So thanks to the efforts of everyone involved we have raised an amazing £9,773.00!!! plus there are some fund matching amounts to still come in so I can't thank everyone enough and hopefully there will be a picture of her new wheelchair in the paper when it arrives for you all to see what you have given her.x