We are raising money for the Fibrous Dysplasia Support Society and Rudy (Rare Disease Researchers) to help fund research into an extremely rare disease.
Fibrous Dysplasia affects only 1 in 15-30,000 but at a very young age Hollie was diagnosed. Over the past couple of years this has proved to be a difficult journey, with Hollie sadly losing her sight in one of her eyes. However, thanks to the ENT Team at Birmingham Children's Hospital we managed to save the sight in her other eye which was also affected although this came with a number of intense operations for Hollie. We are still not out the woods yet and face challenging times ahead with more surgeries in time.
Last year we raised a huge amount which allowed the charity to fly over specialist doctors and surgeons from America to the annual meeting, which provided much more knowledge and insight to this unknown disease.
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