Natasha, mum to Violet with aniridia responded to our calls for fundraising and media volunteers.

She’s been holding raffles and selling goods via Facebook in her home town of Halifax, West Yorkshire. The current drive is for Easter eggs and Mothers day hampers. So far she’s raised over an amazing £400 for Aniridia Network UK.

Around Rare Disease Day a journalist visited them both. She tweeted that Violet was “the cutest person I’d met all week”. On Friday Violet was on the front page of the Halifax Evening Courier.

The article was one of the best we’ve seen about aniridia. The facts about aniridia are generally accurate and it’s fairly positive, balancing the parental concern and stress with hopefulness and support available.

We’d like to say thank you very much to Natasha for stepping up like this. It’s thanks to people like her that the aniridia community so strong. We hope it inspires other to follow her example. Contact us if it does you.