In just three short weeks, our world has turned upside down. My partner, Joe Edwards, began losing his sight and we’ve spent this time going through multiple hospital appointments trying to understand why. Last week, we received the devastating diagnosis: Joe has LHON (Leber’s Hereditary Optic Neuropathy), a rare genetic condition that leads to permanent vision loss, and currently has no known cure.

We’ve been told Joe will eventually lose his sight completely.

There is, however, a little hope. A treatment called Idebenone has shown promise. It’s available on prescription in Scotland and Wales, but sadly not in England. We’ve found a way to purchase it from the U.S., and research suggests it may help stabilise Joe’s vision and in some cases, even reverse some of the damage.

We’re setting up this page to raise funds so we can get Idebenone as soon as possible, and give Joe the best chance of preserving his sight. Every donation, no matter how small, brings us one step closer to hope.

From the bottom of our hearts, thank you.

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