In the midst of the Covid-19 pandemic our beautiful and unique daughter Emily was diagnosed with an ultra-rare, life-limiting, neurodegenerative disorder called BPAN.

Devastating doesn't even come close to describe this situation, but we have hope that the incredible GOSH team will come through for us and hundreds of other BPANners.

I am going to run 30km every week and volunteer my time to charities at least once a week until the target is reached. 

Please help us to keep Emily moving forwards and never reaching the degenerative phase of this awful disorder. 

We would be forever grateful for your generosity ❤️