Our beautiful daughter, Rhiannon was born with a rare eye condition called Aniridia. Aniridia means the iris, the coloured part of the eye, is missing or incomplete. This means her eyes are not able to adjust to differing levels of light. For Rhiannon, Aniridia causes her to have poor vision and extreme sensitivity to light.

There are a number of other eye conditions linked with Aniridia, and we know that Rhiannon also has Nystagmus (uncontrolled side to side eye movements which in itself causes poor vision) and Cataracts. People with Aniridia are prone to developing other eye conditions including glaucoma and cornea disease, which can further reduce their vision.

Aniridia is mostly caused by a faulty PAX6 gene. However after extensive genetic testing (of which some is still ongoing more than 2 years later!), we believe that Rhiannon is rare amongst the rare Aniridics, as her PAX6 gene appears to be normal. Genetically, we have no idea what this will mean for her.

There is no cure for Aniridia. Much more research is needed to help people with Aniridia keep and improve their sight.

Aniridia Network is a small charity set up and run by people with Aniridia and their families. Vaughan and I (Teresa) attended the Aniridia Network Conference last year, where we met others with Aniridia for the very first time. There were talks from doctors and scientists about research into Aniridia and possible treatments in the future. We also heard the most incredible speech from a young lady with Aniridia and how, despite her poor vision, with the assistance of her lovely guide dog, she lives a very fun, fulfilling life, and her advice to parents of Aniridic children was to not prevent them from doing everything they want to! Aniridia Network has also helped me to compile a "Pupil Passport"- a document to help other care givers (Pre-School and swimming teacher etc) to help understand her condition and how it affects her and what she might need help with. Aniridia Network have also given a grant to help fund research into Aniridia.

Please donate anything you can to help raise much needed funds for Aniridia Network, so they can continue to support Rhiannon, her family and other Aniridia patients and their families across the UK.

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