On December 21st 2022, the day before Roo's first birthday, we took him to see our GP with concerns about some slight cloudiness of his eyes. We were immediately referred to a consultant in Newcastle, who suspected Roo may have a very rare condition called Congenital Hereditary Endothelial Dystrophy (CHED). CHED is so rare, there are only three specialists in the UK, with working knowledge of the condition. The specialist nearest to us, being based at the Royal Manchester Eye Hospital, some 170 miles away from us in Northumberland.

The only treatment for CHED is surgery, specifically a corneal transplant, in Reuben's case, two corneal transplants. Thankfully, we haven't had to sit on the waiting list for the surgery for long, Reuben will be getting his first corneal graft on Wednesday 29th March 2023.

Provided Reuben's transplants go well and there's no problems (infection and rejection are both considerable risks in babies), we will be looking at four surgeries in total, two grafts and two micro stitch removals.

This process is going to be a long and massive logistical undertaking, and Reuben will require follow-up care for the rest of his life. In the first month following the first op alone, we'll be needing to travel to Manchester at least once a week. Unfortunately, all care including post operative care, will need to happen in Manchester, which means we'll be needing to self fund a lot of travel and accommodation on top of time off work, to make this happen.

We've set a target but truly, we don't know exactly what to expect from each surgery, so we're very much guessing and hoping for the best. We've no idea how much this will all come to going forward, we're just grateful for anything (and for those of you who have read this far!)

Thank you, from Holly, Richard, Toby & Reuben xxxx