Aniridia Network

By Heather B

I attended an ANUK Conference for the first time in 2014. My daughter was diagnosed with aniridia at 5 weeks old, she is now 3 years old so I had managed to avoid the conference for 2 years. I knew it would be good for me to attend, however, I was relieved when the date was announced and we had already booked our summer holiday!

It was hard enough receiving the diagnosis that my daughter had a severe sight impairment and I didn’t want to attend as I would be meeting people who already had the condition and maybe had further sight deterioration. I was happy in my bubble that she is developing well and using her sight. I didn’t want to be reminded about a future where she would lose her sight further. By living in my bubble I could almost pretend that everything was OK and face each day as it came.

The day was not without it’s difficult times. I did have to meet people with further sight loss. There was so much openness and honesty that at times it was hard listening to the challenges people had faced with schooling and having a sight impairment. However, this was done sensitively and in a way that demonstrated it is possible to overcome these difficulties.

Lyn, Befriending Officer

I’d had a little bit to do with ANUK. I’d accepted a buddy and had few emails with Lyn, the Befriending Officer. When I introduced myself to her, she gave me a big hug and said ‘I am so pleased to meet you.’ I felt at home and accepted. Her son is James, 35 and has aniridia, and at one point she said ‘I still find it scary to be around people with a sight impairment.’

I felt then it was OK to still feel scared at times, and I need to find a box to put this feeling in as it might not go away but this was not a feeling that would turn the aniridia community away from me. At times during our journey into the visually impaired world I felt a fraud, and as if I wouldn’t be accepted because my daughter was doing so well. At the conference I could leave this all behind.

The talks were very positive. As I said it was hard listening to other people’s challenges however it was done in a positive way and the message I actually took home was that these challenges are not insurmountable with planning, support and understanding. I’ve never doubted that my daughter would do well and achieve what she wanted to achieve. I had decided to teach her not to stop if she met a barrier but to find another way around it. I have now met people for whom this philosophy has worked and they have done very well for themselves.

It was also wonderful to hear about the research happening at the moment. This gave me a huge amount of hope.

Mary, Amanda, Veda, Victoria and Jenny

Finally, the question and answer session allowed me to tap into a wealth of professional and personal experience. I was able to get answers for questions I had beens struggling with on my own both in terms of medical care and schooling. Most appointments we attend I feel as parents we are the experts and need to guide professionals. It was reassuring to sit back and be guided.

Overall, I cannot emphasize how much of a positive experience attending the conference was and on returning home actually felt sad that I had not made those connections earlier. I made new friends, felt in a world where people understood the difficulties without having to explain what was going on and why she couldn’t see as well as her peers. Importantly, we got some amazing role models for her to aspire to as she grows up and an enormous amount of hope.

Delegates at Conference 2014