Category Archives: Parents’ accounts

Bringing up children with aniridia and the feelings it generates.

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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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 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

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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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Mark and Harry: Our journey with aniridia presentation

Keynote session at Aniridia Network UK Conference 2014 There was no history of aniridia in the family, but when Harry arrived their journey with aniridia had begun. This session is a personal account of learning to deal with Harry’s aniridia … Continue reading

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50 years with aniridia

To discover that your child has been diagnosed with Aniridia is upsetting and stressful.  In 1964 it was devastating.  Diagnosis: blindness, prognosis, no hope.  I have read my recently deceased mothers diaries and her hopelessness, despair and unfounded guilt are … Continue reading

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