Max is now twelve and was diagnosed just after his 2nd birthday so his journey spans nearly a decade!
When we first started the process of diagnosis we saw a specialist, Dr. Hildebrand at The Royal Berkshire Hospital in Reading, UK. He was so lovely and stayed hours after his shift ended to take Max down to a surgery room in order to put Max under anesthesia so he could thoroughly check his eye. He was the first person to mention Coats Disease to us and was the kindest and most thoughtful man. I’ll never forget him trying to reassure me that he would ‘treat Max like his own child’ whilst I stood sobbing as they put Max to sleep. We never saw Dr. Hildebrand again after this very long day and night but his kindness, knowledge and initial thoughts of diagnosis were spot on.
The picture I attached is a collage of Max. The first photo is when he was sitting in the waiting room at the hospital waiting for his first ever appointment. It was from here our Coats Disease journey really started. The second photo shows ‘the glow’. He’d been put to sleep and had his eyes dilated so the glow was really visible. And then the final photograph is Max now – 12 years old, loving life and not letting Coats stop him from doing anything he sets his mind to!
He has lost the sight completely in his left eye with full retinal detachment, cataract and glaucoma. Thankfully he is pain free but does get little flare ups every now and then.
When we started this journey there was very little information about Coats Disease and very few people, including professionals, knew much about it so I’m more than happy to keep raising awareness.
