For Bowe

Jon and Mike will be climbing Ben Nevis in Scotland in June 2023, The highest mountain in the UK to raise awareness/funds for Bowe Hurst here is her story, 

Christmas 2020 Bowe was taken to A&E as her mum noticed her eyesight wasn’t quite right and her eyes were shaking from side to side. She was later diagnosed with Cataracts in both eyes, uveitis and Bilateral Nystagmus. Then in January 2021 she was taken to Theatre to have the cataracts removed, they also removed both her lenses. They were happy with the op and prescribed her with strong lense glasses. They was not certain of Bowes actual capable sight but were hoping with the help of the glasses she would finally get some sort of vision. As most child cases of cataracts happen when the child is born and Bowes didn’t, she then started a long year of tests after tests to see if they could identify what had caused this. In May 2022 the genetics team confirmed she had a super rare condition called Autosomal dominant neovascular inflammatory retinopathy, due to De no vocal N5 gene mutation which unfortunately is that rare there was only another 3 cases over seas that they could work from. due to this condition Bowe became quite unwell in June and was taken back into Theatre for an eye examination. This is where they noticed the retina in her right eye had become detached, she was then immediately admitted for steriod infusions for 3 days. Unfortunately they was unable to operate to save the sight in this eye and she became completely blind in the right eye. They started Bowe on weekly medications and injections to fight the inflammation in her left eye to try stop the same thing happening, but then in November Bowe became unwell again and was taken to theatre where they unfortunately gave her parents the bad news of the left retina detaching just like the right. Bowe no longer needed any glasses to help her as she was now completely blind in both her eyes. She still has a long road to go as it’s now a guessing game of what else this condition can or would do, the only thing they do know is that the other children they found with the condition also lost their hearing, so Bowe will start regular hearing tests. Bowe is a strong and brave girl and will get through any battle she faces ❤️