Hello, my name is Charlotte and I am mother to a ridiculously delicious six year old girl named Scarlett. In every way Scarlett is a picture of happiness and joy. She needs very little to keep that big smile spread firmly across her angelic face, literally affection and biscuits will do the trick! I am … Continue reading My bouncing eyes baby!
We wanted to begin 2017 by sharing a good news story by Meg Tatton which we hope will inspire other parents and show that there should be no barriers in the classroom. Meg’s ten year old daughter, Lily, has recently passed an entrance exam and won an academic scholarship thanks to the support she received from … Continue reading An inspiring story about passing exams!
My daughter has congenital idiopathic nystagmus. Idiopathic means that despite having every test available no physiological cause can be found. Congenital means that it was either present at birth or very early on in life. I think I can pinpoint the day her nystagmus arrived. Lying on the rug in the picture above she is … Continue reading Discovering your baby has nystagmus
This week the video blog at the Nystagmus Network features our very own Sue! The video is her interview with Peterborough Community Radio which is hosted by one of our very loyal and long standing supporters Tim Heywood. Sue and Tim discuss the Nystagmus Network, nystagmus and Wobbly Wednesday.
Our son Joshua was born with oculo-cutaneous albinism in 2003. It was a surprise to both our families as no one on either side had any recollection of anyone in the family having albinism. The thing that has affected Josh most is his visual impairment. His eyes let in too much light due to the … Continue reading Do you want to ski like Josh?
I made my first contribution to the Nystagmus Network Focus newsletter after much parental cajoling and days, weeks, months, if not years, of adolescent procrastination, in the mid-1990s. To save readers from searching the archive, I’ve got what I consider to be mild nystagmus and bad short sight and astigmatism. Contact lenses are better than … Continue reading A mum with nystagmus shares her story
When your child has nystagmus there might be slightly more to think about before you wave goodbye at the school gates than new shoes and homework diaries. Especially in the early years, when your child can’t necessarily advocate for themselves, it can be helpful to plan a meeting with the new teacher either ahead of … Continue reading Nystagmus and the new school term – by Elisheva Sokolic
When Maxine and Matthew Wilson’s son, Charlie, was diagnosed with nystagmus at six months old, they freely admit they went into a panic, which is probably what most parents do when suddenly faced with the prospect of their child growing up with a visual impairment. They thought he’d never be able to play ball sports … Continue reading Parents share their delight in their son’s success
I had always planned on being a laid back parent. My son, born with perfect vision, had been a breeze. And then my daughter entered school. Even though she had albinism and nystagmus, I assumed I’d continue being easy breezy. I would explain the accommodations she needed, the teachers would listen, and we would all … Continue reading I’m the parent I never thought I’d be
My son, George, has congenital idiopathic nystagmus. The terminology may be familiar to ophthalmologists, but it’s baffling to anyone else. In George’s case, no one can identify a cause. So begins our story of discovery about nystagmus, what it means to those who have it, to those around them and the shocking ignorance of people … Continue reading George has nystagmus – goodbye!