The total amount raised was £1,439.00
The monies are equally distributed between Sophia’s Story and The Neuro Foundation.
Sophia’s Story is a sad story, she was diagnosed with Lobar Holoprosencephaly at one week old. Holoprosencephaly is a life threatening disorder with the effect of a single-lobed brain structure and severe skull and facial defects. In most cases of holoprosencephaly, the malformations are so severe that babies die before birth. There was only 1% chance that Sophia would survive until she was 6 month old – yet here we are at 12 months!!!!
The Neuro Foundation is the authoritative voice of neurofibromatosis in the UK. They Achieve this by providing first class information, support and advice; facilitating and promoting innovative research and being an advocate for those with neurofibromatosis. The gesture was in support of our good friend Mr Ronnie Rowe.