Rhiannon’s Story

“I’m immensely proud of my loving little girl in every possible way, Probably her toughest personal challenge this year was learning to jump, due to her poor vision, but her persistence paid off.”

For Rare Diseases Day 2021, the key messages are; Rare is Many, Rare is Proud, Rare is Strong. We gathered stories to showcase how those with aniridia lead their lives, proudly and with strength. These stories will raise understanding of aniridia with members of our aniridia family and beyond.

Rhiannon’s mum, Teresa, kindly reached out to us to share her daughter’s story. Rhiannon is an outgoing young person whose passion for music and drive to learn has not been slowed down by her aniridia!


4 year old girl playing piano
Rhiannon celebrating Rare Disease Day at the piano

Rhiannon aged 4 has aniridia, resulting in being severely sight impaired. She struggles with severe photophobia and doesn’t have the greatest depth perception.

Rhiannon is a bright happy little girl, who LOVES to talk (and talk and talk!) I am so proud of her confidence to start a conversion with a complete stranger, of any age and dearly hope that continues 
Our home is a bit like living in the London West End as Rhiannon is always singing… Never nursery rhymes… Usually made up songs (and some.of them are quite good!) or songs from the 90’s!

I am immensely proud of my loving little girl in every possible way, An achievement in the last yearis learning her phonics, starting to spell words counting up to 40, down from 10-0. Probably Rhiannon’s toughest personal challenge was learning to jump… Almost certainly a bigger challenge compared to her peers due to her poor vision, but her persistence paid off.

When I asked Rhiannon what she is proud of she replied “Playing the piano!” “


We at Aniridia Network are so impressed by Rhiannon’s passion for music and all that she has learnt at such a young age with aniridia! Well done on all your hard work!

Impressed by Rhiannon’s story? Share your story on Rare Disease Day or any other time tell your story on our blog! It all goes go towards raising awareness of aniridia and showcase the amazing things those living with aniridia can achieve.

Logos of Rare Disease Day, Rare Disease UK Aniridia Network. Rare is Many, Rare is Stroung Rare is Proud.

About aaronleeauthor

A writer of History and politics so you know i'd make a great dinner guest. Despite my modern taste, i can dabble in the classic, ancient and medieval upon request. History Student, Award winning museum volunteer and St John's Ambulance Unit Manager.
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