Since learning about Jack’s nystagmus as well as making friends at the Bounce meetings (local group for parents of visually impaired children) I’ve been to, I’ve made a couple of online friends who have been really supportive over the past months.
Chris McMillan. I got in touch with Chris after I saw an article in the March 2008 Nystamus Network newsletter about her and a charity she helped set up called China Vision UK, and since then we’ve been in regular contact. I’m very interested in China and it turned out we’d been on holiday there the same year. Chris shared her photos and a diary she’d written which brought back many happy memories. It was also a useful and reassuring insight into what it is like for a person with nystagmus on holiday.
We’ve also shared books, TV series, newspaper articles, nystagmus experiences and more recently baby stories as Chris’s first grandchild is due in November.
Happy Ashleigh. Ashleigh is mum to twins Austin and Makayla who live near San Fransisco in America. The twins are a few weeks older than Jack, and Makayla was diagnosed with nystagmus around the same time he was. Ashleigh found this website and left us a comment, and I have since enjoyed keeping up to date with updates on her blog. We’ve also been e-mailing about the tests and support our children have had for their nystagmus and family life in general. It’s interesting learning the differences between our two countries and I look forward to sharing many more stories and experiences as our children grow up.
In addition, I’ve found the Nystagmus Network Forum, the Nystagmus Forum by James and more recently the American Nystagmus Network E-mail Discussion List very helpful. I’ve learned so much and the questions people ask are usually answered quickly. Both the UK and USA Nystagmus Networks have Facebook pages where you can post questions and answers.