Family Stories

Content of the Family Stories and Blogs is the personal views and experiences of the authors and should not be read as action or advice from the Norrie Disease Foundation.

What Braille means to me

photo of Anthony Pitch Ryers speaking at the Norrie family meet in November 2018by Anthony Pitch Ryers who has Norrie disease.

Although I was diagnosed with dyslexia and am hence less good in Braille than I would like to be, I never for a minute underestimated the importance of Louis Braille’s work.

Often, it is said within the blind community that the era of braille is over. Speech technology would give easy access to digital text without having to print heavy and voluminous braille books or carrying around braille displays.

Admittedly, without this technology, I would not by far stand where I stand today and the possibilities it gives to access just about any digital information quickly and easily are almost endless. But even as a diagnosed blind person with dyslexia, I can say that nothing beats the richness of being able to exactly read what is written. This is something that is only possible thanks to Braille. Beyond
providing a literary experience, reading Braille regularly is also the only way to fully master the spelling of a language, a skill that is not trained when using digital speech, but which is no less than essential in today’s labour and study market.

Most of all though, Braille is the most important gateway to the world’s communication and literature for people who also have a hearing impairment, which is relevant for Norrie disease in particular.

Over all, I hence think that Braille skills are still a must have in today’s society and I would advise any blind person to train and maintain them, myself included.

Cam and his family

Rare Disease Awareness

Five years ago our lives were affected by a rare genetic disease.

I will never forget the day my world came tumbling down before me. The day my beautiful baby boy was diagnosed with Norrie Disease.

We could never prepare for what this disease would bring or how it would change our entire world.

But looking back on our journey, we know we are blessed to be part of a family with this rare condition.

Rare is good, rare is unique, rare is BEAUTIFUL.

I can guarantee you will never meet another child like my son, his soul will bring joy to your life forever.

Rare made me STRONG.

I am proud to care for someone rare.

The Norrie Disease Foundation raises funds for family days to provide peer and emotional support to the whole family. These are at the heart of our activities and are so important to the children, young people and adults affected by Norrie disease and their parents and siblings, to be able to speak to others in the same situation as themselves.