Child with aniridia walked to fundraise for ANUK

Tora with her cane and mum Susan

A four year old child with sporadic aniridia has raised over £1,000 by walking two miles in aid of Aniridia Network UK (ANUK).

Tora, is blind in one eye and only has peripheral vision in the other. She was joined on the walk near Leeds by her mum Susan, sister, Riley (8), brother Zachariah (1) and 44  other family and friend. Together they raised over £2,00 to share between two charities. You can still sponsor them.

The sun was shining and everyone enjoyed the views, the countryside and playing on sheep sculptures found along the way. Tea and biscuits were kindly provided at the end by Cleckheaton Central

Methodist Church.

Tora was diagnosed with aniridia three days after her birth at Bradford Royal Infirmary.  Her parents, Susan and Gordon from Cleckheaton, struggled to find any information about the condition at the hospital. “We were beside ourselves. We didn’t know what it was” said Susan. “Then I ended up speaking to Aniridia Network UK and they explained what it was, what to do and what to look out for – they were really helpful.”

Susan speaking at the ANUK Conference 2012

Since then the Susan and the family have become involved with the charity including being a guest speaker our annual conference in Manchester this year.

Their walk raised money to let ANUK produce a leaflet to put into every hospital for families in the same position as they once were.

It will also fund the Bradford Toy Library at St Luke’s Hospital. It loaned Tora fibre-optic lights to stimulate her eyesight. This local charity has also provided invaluable support to the family through coffee mornings and trips.

“These are the two charities that helped us the most and we would like to raise awareness about the work that they do” said Susan. “Parents can talk to other people who understand the situation they are in. They have been a massive support.  ANUK really helped us because we were able to speak to adults who had the condition and share our experiences.”

Susan says Tora “is just like any other young girl. She absolutely loves music, anything from nursery rhymes to Lady Gaga! She is already learning Braille, because we don’t know what will happen in the future to her eyesight, and she is doing really well.” Tora uses a cane and starts school this year.

ANUK Chairperson Katie said “This was a great chance to continue the Paralympic 2012 spirit. We would like to thank Sue, Gordon and Tora for all their hard work raising money for us. We rely on people like them to raise the money we need to keep running each year.”

Please sponsor Tora generously or get sponsorship do something similar yourself – contact us for details.

The walk took place on Saturday 15 September along the Spen Valley Greenway.

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About Aniridia Network UK

A charity support group for people with the genetic visual impairment aniridia and their families in the UK. Our vision is that people with/associated with aniridia are hopeful, confident, supported and well informed regarding aniridia. Founded in 2000. Registered as a charity in 2011 with HMRC reference XT26830
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