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Category Archives: Parents’ accounts
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
Posted in Campaigns, Parents' accounts, Patients' tales
Tagged Aniridia Day, AniridiaPoem
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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
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
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
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
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
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
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
1 mile open water swim in aid of aniridia
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
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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