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.

We were extremely fearful for Rhiannon's future when she was first diagnosed. We knew there was something wrong when the newborn checks were performed in hospital, as her pupils didn't react when they shone their light in her eyes. We had a diagnosis when she was 3 days old, and were told that genetic testing was required as Aniridia is sometimes part of another syndrome which could have life threatening conditions associated with it. Fortunately, after 3 months of torturous waiting, the tests showed that thankfully Rhiannon did not have the syndrome. 

We first made contact with the Norfolk and Norwich Association for the Blind when Rhiannon was 3 months old, and have participated in their monthly music session every month since. Rhiannon and the other visually impaired children love these sessions. There is opportunities for the children to play instruments such as shakers, claves, drums and ukulele, and fun songs are sung and danced to using other sensory items like silk scarves, soft toys, parachute and stretchy lycra. For me, I have met other parents who have a child with a visual impairment of varying severity. This has been a huge support to have others who can relate to talk to, and I feel it is important for Rhiannon to grow up not feeling alone with her disability, and she loves visiting the NNAB and seeing her friends there. NNAB have kindly agreed that any money we raise from this page can go directly to keeping these sessions going.

If you are able to sponsor us, you will be directly helping the blind and visually impaired pre school children of Norfolk and Norwich.  

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