Category Archives: Parents’ accounts

Bringing up children with aniridia and the feelings it generates.

Light stimulation centre wows child with aniridia

By Rob and Amelia From about 5 months old our daughter, who has sporadic aniridia, has shown an interest in LED lighting. After speaking with doctors at Moorfields Eye Hospital and more importantly, all the lovely people we met at the Aniridia Network … Continue reading

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Goggles and aniridia

Swimming is a very healthy and enjoyable activity, but with reduced vision and highly sensitive eyes due to aniridia, regular goggles may be of limited use. Children, for example, may find it difficult to see their instructors in swimming lessons. … Continue reading

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Inspired to study aniridia for a degree

To understand her cousin’s condition, Eve reviewed research on aniridia, for the final module of her university studies. Her results are now in… Continue reading

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Blossoming at college

I wanted To share a very special week with you all. My daughter who has aniridia performed at her first college dance performance this week. She was amazing. She reduced me to tears she was memorising honestly. To all those worried … Continue reading

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Aniridia poem competition UK results

We are elated to announce the winner plus the awarding of a special prize in our Aniridia Day related poetry competition. “I was impressed with the outstanding talent.” said judge and new trustee Emily. We were delighted to receive 10 … Continue reading

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School girl bakes buns in aid of friend’s aniridia

By Natasha My daughter has aniridia. A girl at her school, not much older than Violet held a bun sale to raise money for a charity of my daughter’s choice. The girl arranged it all by herself, made all the posters to … Continue reading

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Serena and Violet with aniridia and thier mums make friends

I met Dawn and Serena at an event held at Eureka Museum in Halifax aimed at visually impaired children. I recognised her from an Aniridia Network UK conference we had both attended in previous years, So I approached her to … Continue reading

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A strong child and a great council visual team

I feel I need to share this with you all. My daughter was diagnosed with aniridia at 6 months old and has grown from strength to strength. She is now 6 years old and each day she surprises me with … Continue reading

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Help with conference costs

The cost of travelling to and attending our events is a big issue for some people. A family in Wales who receive support from their local integrated team for disabled children (social services) found a solution. They asked their social worker … Continue reading

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A child with a rare condition brings additional challenges and opportunities

By Heather B Being the parent of a child with a rare condition brings with it an additional layer of challenges and opportunities. Both my children were born with medical conditions but only one is rare. Natasha was born with … Continue reading

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