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 year, Jeans for Genes Day runs from Mon 16 – Fri 20 September and invites everyone to wear their jeans to work or school in … Continue reading Jeans for Nystagmus Genes: Delilah’s story
Nystagmus Network’s Rachel, writes: Here at the Nystagmus Network we’re always looking for new opportunities for our members. Recently our Education Advocate, Frances, came across a charity awarding grants to blind and partially sighted children for music lessons. The Amber Trust offers grants for singing or instrumental lessons, music therapy and concert tickets to children … Continue reading Little Amber – there to help
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, Ian, how Harry is getting on, 4 weeks after his operation. Ian writes: “Harry’s eyes are now nothing but a slight irritation and, apart from … Continue reading Guest post: Harry’s back at school!
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 is settling down and he is able to see much better. He is still having to have eye drops 4 times a day for the … Continue reading Guest post – Harry’s recovery from surgery continues
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 it was time for father and son to have a chat about how things had gone. Ian continues: On the Sunday post operation I had … Continue reading Guest post – one week after Harry’s null point surgery
Ian is sharing his thoughts and experiences as his son undergoes Anderson Kestenbaum surgery this summer to address the head turn associated with his null point. In this post he recalls the day of the surgery: We had to be there at 8.00am and Harry was in really good spirits. He went down to the … Continue reading Guest post – Harry’s null point surgery
Harry and his parents had many, many questions before finally deciding to go ahead with null point surgery. Here are just some of the questions the family asked, with the answers they received from the surgical team: Is this a complicated procedure? Yes. Operating on eyes in general is complicated, but when 2 eyes are to … Continue reading Guest post – questions for Harry’s consultant
15 year old Harry has undergone the Anderson Kestenbaum procedure this summer. Parents often ask what null point surgery involves. Thorough consultation with the ophthalmologist and the surgical team are key. Harry’s Dad, Ian, asked us to share his son’s experience. Ian, writes: My son, Harry is now aged 15 and was born with idiopathic nystagmus. … Continue reading Guest post – Harry’s null point surgery decision
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
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.