Ben Haynes is a 22 year old singer/songwriter with nystagmus. He is a true inspiration to others with the condition. He has a professional website where you can listen to his songs.
This year, on Wednesday 5th November it’s the world’s second international Wobbly Wednesday – a very special day for all of us who have involvement with nystagmus. The day is dedicated to raising awareness of the condition and so far celebrations are set to go with a bang!
Back in June, Jack and I went to our third Nystagmus Network Open day. This year it was in Leicester, and there was a great line up of sessions including a speech by Sarah Caffrey, a paralympian with nystagmus and achromatopsia.
Jack was recently issued glasses by the Optician at Sunderland Eye Hospital.
Jack started school nursery in January, and attends five mornings a week.
Jack was three in December. Over the past year he’s continued to do well and exceed our expectations. The terrible twos’ have been tricky at times (help!), but we think this is more to do with personality (Jack remains very independent!) and age rather than sight.
Following our last post about Wilson using an I-Pad to help him at school, his Mum recommended more education resources on the RNIB (Royal National Institute for the Blind) website. We’ve been impressed by the up to date content across the site, and here are links we’ve found particularly useful/interesting so far …
Earlier today Mum of 10 year old Wilson sent us a link to this inspiring RNIB (Royal National Institute for the Blind) video explaining how technology is helping her son with nystagmus at school.
What a special and successful day this first ever international nystagmus awareness raising day has been 🙂
On 21st January 2011, a lady called Jo wrote a post on her “The Shifty Eyes Blog” that touched our hearts and gave us hope when Jack was first diagnosed.