Mark and Harry: Our journey with aniridia presentation

Keynote session at Aniridia Network UK Conference 2014

There was no history of aniridia in the family, but when Harry arrived their journey with aniridia had begun.

This session is a personal account of learning to deal with Harry’s aniridia and its implications from a family perspective. Everyone’s journey is different and their challenges of moving the family twice in the UK and growing up through the education system with several changes of school are discussed.

By working to understand the condition, with support from a wide range of organisations, and by providing opportunities for Harry, they have grown as a family, had experiences that they might not otherwise have had and have learned a lot about themselves. They consider themselves to be fortunate, in that aniridia has given them as much as it has taken away.

Here’s a video of Harry showing off his juggling skills at a previous conference.

About Aniridia Network

A charity support group for people with the genetic visual impairment aniridia and their families in the UK and Ireland. Our vision is that people with/associated with aniridia are hopeful, confident, supported and well informed regarding aniridia. Founded in 2000. First registered as a charity in 2011 and fully in 2018.
This entry was posted in Parents' accounts, Patients' tales and tagged , , . Bookmark the permalink.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.