Introducing Harry’s story

This is Harry. He’s 15 years old. He has nystagmus and, as you can probably tell from the photo, he also has a fairly marked head turn associated with his null point. This summer, Harry and his parents decided it was right for him to undergo surgery. Known commonly as ‘null point surgery’, because it seeks … Continue reading Introducing Harry’s story

How amazing is Sara?

A guest post from Sara’s Mum … This is my daughter Sara. She’s 17 now and born with albinism and nystagmus. Her sight is badly affected, but nothing stops her!!! She is in mainstream school, a huge circle of amazing friends and lives for sports. She has an all Ireland silver medal for camogie (an … Continue reading How amazing is Sara?

How amazing is Macy?

Like lots of children, Macy has nystagmus as well as more serious health problems. Here’s her story, as told by her Mum … In January 2016, Macy our baby girl suffered a sudden out of hospital cardiac arrest at 3 months old. After being resuscitated twice, once by paramedics at home and again at Wigan hospital, … Continue reading How amazing is Macy?

How amazing is Michael?

A nystagmus Dad writes: Michael is 19. In 1999 he was diagnosed with congenital idiopathic nystagmus at around 3 months of age. We immediately did an internet search to find out what nystagmus was. I couldn’t even spell it properly, but within a short time we found Nystagmus Network. This turned out to be a … Continue reading How amazing is Michael?

How amazing is Denni-Leigh?

A Mum’s story: Denni-Leigh was born weighing 5.15lbs on a sunny June morning. She was a perfectly beautiful newborn baby. Only at about 4 weeks old the health visitor noticed that something was wrong with her eyes. We were told that Denni-Leigh had congenital nystagmus, astigmatism and a squint and was extremely long-sighted. Being such … Continue reading How amazing is Denni-Leigh?

How amazing is James?

Nystagmus Dad, Robin, writes: My 9 year old son, James, has OC Albinism and Nystagmus, but he and I started learning the guitar together about 3 years ago ( he obviously struggled to see the music and the strings on the guitar, but, when blown up, he can read the score and any annotation written … Continue reading How amazing is James?

How amazing is Jac?

Jac is running a 2.5k fun run this month to raise awareness of nystagmus and fundraise for the Nystagmus Network. His Mum and Dad didn’t find out Jac had nystagmus till he was 3 years old and always tell him he can do anything he wants. We’re sure Jac will achieve great things! You can … Continue reading How amazing is Jac?