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Category Archives: Parents’ accounts
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
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
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
Posted in Parents' accounts, Patients' tales
Tagged Conference, Conference 2014, event
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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
Posted in Parents' accounts, Patients' tales
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Open letter to anyone with a child recently diagnosed with aniridia
I am writing this to give reassurance and a firm (but virtual) shoulder to lean on. No doubt you have just returned from the hospital, numb with the news that your child has been diagnosed with a rare eye disorder … Continue reading
Posted in Parents' accounts
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Aniridic Family group on Facebook
To get answers to questions on aniridia and meet people affected by it, a great resource is the Aniridic Family group on Facebook. It has over 500 members from all over the world and is still growing. Anyone can start … Continue reading
