This Nystagmus Awareness Day we’re asking you to share your story. You can share your nystagmus story here This is Sharon’s story … My nystagmus story started October 2017 when … Continue reading Sharon’s nystagmus story
Category: Parent stories
James’s nystagmus story
This Nystagmus Awareness Day we’re asking you to share your story. This is James’s story. You can share your story here Until my son Sullivan was born, we as a … Continue reading James’s nystagmus story
New research explores parental experience of their child’s diagnosis
What is the psychological impact on parents immediately following a child’s diagnosis of congenital sensory impairment? Rebecca Greenhalgh, Trainee Clinical Psychologist at Coventry University is leading a new research project, … Continue reading New research explores parental experience of their child’s diagnosis
Thank you, Nadine
Thanks to her book ‘Can I tell you about nystagmus?’, children and their parents feel better able to explain nystagmus to others. In 2020, with the country in lockdown and … Continue reading Thank you, Nadine
Homeschooling and nystagmus
A Guest Post by author and nystagmus Mum, Nadine Neckles So the world has turned on its head and what we once considered normal and safe has morphed into anxiety … Continue reading Homeschooling and nystagmus
Jeans for Nystagmus Genes: Delilah’s story
Delilah’s story: Delilah is helping to raise awareness of children’s genetic disorders with the UK children’s charity Genetic Disorders UK and their annual fundraising day, Jeans for Genes Day. This … Continue reading Jeans for Nystagmus Genes: Delilah’s story
Little Amber – there to help
Nystagmus Network’s Rachel, writes: Here at the Nystagmus Network we’re always looking for new opportunities for our members. Recently we came across a charity awarding grants to blind and partially … Continue reading Little Amber – there to help
Guest post: Harry’s back at school!
Over the summer holidays we followed Harry’s progress as he underwent the Anderson Kestenbaum procedure to address the head turn associated with his nullpoint. Today we hear from Harry’s Dad, … Continue reading Guest post: Harry’s back at school!
Guest post – Harry’s recovery from surgery continues
Harry and his family continue their post surgery journey. Ian writes: On day 7 after the op Harry is able to open his eyes for longer periods, the blurry vision … Continue reading Guest post – Harry’s recovery from surgery continues
Guest post – one week after Harry’s null point surgery
Harry has undergone the Anderson Kestenbaum procedure this summer to address his marked head turn. His Dad, Ian, has asked us to share their experiences. A few days after the operation … Continue reading Guest post – one week after Harry’s null point surgery