Category Archives: Parents’ accounts

Bringing up children with aniridia and the feelings it generates.

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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Posted in Campaigns, Parents' accounts, Patients' tales | Tagged , | 3 Comments

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 anirida 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 at I approached her … 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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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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Heather’s voyage of discovering support for herself and Zoe

Heather is mum to bright and bubbly four-year-old Zoe who attends the Royal London Society for the Blind Nursery. Zoe has aniridia and is registered ‘Severely Sight Impaired.’ Heather does not allow Zoe’s sight condition to define her; instead she … Continue reading

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Beth’s experience of research into development of sighted babies of visually impaired parents

Beth, who has aniridia, and her sighted son Edward are taking part in research into his development. Researchers want to know how having a visually impaired care giver affects babies. Beth says she can “highly recommend taking part” so we recorded … Continue reading

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Posted in Parents' accounts, Patients' tales, Research | Tagged | 2 Comments

1 mile open water swim in aid of aniriida

Sunday 16th February 2014… 12.30pm I got the phone call I had been waiting for. My sister, my best friend had gone into labour and was due to give birth to my nephew. As a mother myself having given birth … Continue reading

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Visiting Disneyland with aniridia

Earlier this month Laura asked on the Aniridic Family Facebook group “Has anyone visiting Disneyland Paris been able to get a priority card for a child registered blind? Our son Josh is nearly 8 years old. He is not great … Continue reading

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Questions & answers on aniridia

Session at Aniridia Network UK Conference 2014 By: Panel of experts and individuals affected by aniridia A chance to ask that question that you always remember on the way home from your appointment or that there never seems to be … Continue reading

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