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In late 2013 our beautiful friends were told their gorgeous little boy had Sandhoff disease.  It knocked us all for six.  Sandhoff is a very rare inherited disorder that progressively destroys nerve cells (neurons) in the brain and spinal cord.  Children with the severe infantile form of Sandhoff disease usually live only into early childhood. Our gorgeous little friend unfortunately has the severe form.

We did and continue to do what all friends do - provide support and assistance in whatever form we can.  Be it a to shoulder to cry on, endless hugs, keeping them company while sitting in hospital waiting rooms, take them pack ups, cook them dinner or playing taxi.   The CATS Foundation have been a great support too - providing information, a listening ear from someone who is not personally involved, providing equipment and toys, treats for older siblings and providing funding for respite.  This is all on top of providing funding into research into the diseases for a potential treatment.

My pledge is to raise £2014.00 during 2014.  I promise to entertain you by completing a range of tasks that are well out of my comfort zone - eek!  My fundraising page will be updated as and when the tasks have been finalised.  Any donation, big or small will be forever gratefully received - thank you from the bottom of my heart x

'NEWS FLASH 11.02.14' Signed myself up for the MK running festival 10K on the 9th March 2014.  Started running again on 18.01.14 after 18 months off.  Just to make it that bit harder I have agreed to run in fancy dress!!  So if you go down to Milton Keynes on the 9th March you might see 'Big Bird' running!!!!  COMPLETED 1 hour and 7 minutes, 844th out of 1104 runners.  Hottest day of the year too - so was cooked by then end x