On Nystagmus Awareness Day 2018, the Nystagmus Network’s Information and Development Manager, Sue, shared her nystagmus story and explained why it’s so important to continue to raise awareness of nystagmus. Read Sue’s online article here.
Category: Parent stories
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?
How amazing is Ben?
Ben’s Mum tells us: “I am incredibly proud of my son, Ben who is 10 and has nystagmus. He plays for the under 10s Winslow Tigers football team. Recently he scored a hat trick and received the Man of the Match Trophy. He has to work twice as hard as his friends, as he hasn’t … Continue reading How amazing is Ben?
How amazing is Rocco?
Rocco is 6 years old. He has Ocular Albinism and nystagmus, he also has other disabilities, but, for the first time in his life, his parents have got a report saying he was age appropriate at reading. They are totally thrilled because they never thought he’d read. Well done, Rocco!
A unique way to raise awareness
Vicky is a nystagmus Mum who came up with a really different way to raise awareness of nystagmus in the run up to Nystagmus Awareness Day on 20 June. She tells us: “Here are some rocks I’ve painted as part of the “Rocks of Swindon” project about hiding and finding rocks around Swindon. I thought … Continue reading A unique way to raise awareness