Disgusted at the mainstream school Josselin has been attending since Sept 2011. As if lying to the LEA and saying she started in January 2011 even though we had filled in no registration forms and had written to the school explaining she wont be there because they havent made provision for her regarding access around the school, training and support - obviously saying she has started in January 2011 means the school start receiving money for her while she isnt there. From Sept 2011 it has been a constant battle - one we could do without after all Josselin has needed 5 operations this year along with hospitalizations for illness.

http://www.westburywheelers.co.uk/events.html 

 

Please see the above link for details of another fundraiser planned for Josselin! We were really suprised and delighted when Lee - Josselins Dad had a phone call from westbury Wheelers to say that the local cycling and running group will be holding a joint fundraiser on 30th Dec to raise money for Joss. They are going to be cycling and running up and down Westbury Whitehorse to make the distance of Mount Everest! A really difficult challenge, I find it hard to even walk up there once. Thank you so much. xx

 

Hi All,

 

Just to let you know that we are arranging a Music Fund raising Night to raise much needed funds for Josselins equipment and therapies, also if we manage to raise enough money we would like to take Josselin to the 2013 Charge syndrome conference in Arizona. This will give ourselves and Josselin chance to meet other families and children with this rare condition and also the worlds leading experts on charge syndrome will be there too, this would also give us a chance to get the answers to many questions that health professionals in the UK have been unable to provide us with.

Josselins breathing has not been very good for the last few nights, she has spent a night in hospital but still not sure why she is obstructing with her CPAP on. Did a sleep study last night but she wasn't keen in keeping the nasal prongs in so that probably won't tell much! She is having the 1st stage of her BAHA operation next week so will have it looked into more after that. x x

Josselin and I travelled to Westminster today to the Houses Of Parliament where we met with our local MP Dr Andrew Murrison in the Methodist Central Hall to talk about the deafblind support offered in Wiltshire. Had time for a bit of site seeing and saw where they are setting up for the Royal Wedding. Josselin really enjoyed being followed around by a photographer all day and the MP was very nice.