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 people, 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 ahead.
The charity host an annual meeting that allows sufferers from all over the country to attend with their families, to get some support and a better understanding of the disease. This year, FDSS are aiming to raise £10,000 to fly over doctors and surgeons from America who have a lot more experience in this disease where they can shed some further insight and knowledge.
As I am sure most of you know, we are not runners so anything you can give to motivate us and help make this run almost bearable is really, really appreciated! Thanks for taking the time to visit our JustGiving page, we better get training...
We thank you from the bottom of hearts for any donation you can give 💛
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