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 … Continue reading Guest post – Harry’s null point surgery
Category: Parent stories
Guest post – questions for Harry’s consultant
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 … Continue reading Guest post – questions for Harry’s consultant
Guest post – Harry’s null point surgery decision
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. … Continue reading Guest post – Harry’s null point surgery decision
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 … Continue reading Introducing Harry’s story
Sue shares her personal nystagmus 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. … Continue reading Sue shares her personal nystagmus 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!!! … 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 … 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 … 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 … 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 … Continue reading How amazing is James?