Anthony's story

Helping Anthony navigate his daughters diagnosis

When a child is diagnosed with a vision impairment, the spotlight can, naturally, fall solely on them. But their parents often need support, too, especially with their mental health - and that’s something that can often be neglected.

RSBC’s Families First service provides support for the whole family, from parents to siblings and grandparents, as well as to children and young people who are blind and partially sighted. That support is something that dad Anthony, from South Tyneside, has been grateful for in recent months. 

Anthony says: 

“My daughter, Florence, has Aicardi Syndrome, which is a rare genetic disorder that affects the brain and eyes. It means that life for our family will never be the same again. 

When we received the diagnosis, it was like the whole world had changed. I haven’t recovered from it yet – it feels like a grieving process. The life you thought you and your child would have just isn’t there any more. 

During her pregnancy with Florence, my wife Kate had the usual tests. We had no idea that anything was wrong. Florence will be two very soon, and we found out when she was six weeks old. We noticed that there was something that looked different with her left eye, as it was smaller and the pupil seemed strange. We kept saying to the doctors and nurses that something wasn’t right, but they didn’t believe us. It was our health visitor who listened and agreed that it should be checked, so we were referred to the eye infirmary in Sunderland, where the diagnosis of Aicardi Syndrome was confirmed. 

Learning about Florence’s condition was like a bad dream. In the space of a week, we found out that she was blind, then we had more and more awful news about her health.  

Our health visitor gave us the number for RSBC, and we’re so glad they did. The support Kate and I have received from Jeanette, our Family Practitioner, has been excellent. We both have time with her. She isn’t at all condescending in the conversations I have with her, and she has a great sense of humour. We get on well - we have a laugh, and we just have conversations, really.  

At the pub on a Saturday, I’ll talk about football tactics with my friends, but generally men don’t tend to speak about personal things when they meet up. Jeanette is great because she helps me by talking things through. When I think I know the direction I want to take with something, I’ll discuss it through with her, and most of the time she’ll back me – I just need someone to help me understand whether it’s the right thing to do.  

Kate and I enjoy having our space with Jeanette and feel it’s good that she knows how we’re both feeling. By knowing what we’re thinking, she can help us understand what the best way forward for our family is.  

Jeanette’s been a real help with my mental health. Some weeks are better than others for me, though. Today is the 28th day of the month, and Florence has spent 24 of those days in the hospital. Before, I wouldn’t have coped with that as well as I can now. In fact, in the beginning, I wasn’t coping at all. I couldn’t see any light in the tunnel, and I just didn’t want to get up in the morning.

Jeanette’s been a huge, positive influence. She listened to me when I considered reducing my work hours, and helped me see that I couldn’t do everything. I needed to look after myself too. So now I have every Tuesday off, which has helped my mental health. And these days I see my friends, and Kate and I go to the cinema. 

I feel I have a good life, but of course there are still problems that aren’t going to go away, which means I have bad times too. Christmas was especially hard, but now I try to enjoy the little wins when I can. 

To any parent who’s in a similar situation, I’d always promote speaking to someone. Most people need to talk, but in the modern day, with the internet, we see less and less of each other in daily life. That's where RSBC can help. They’ll listen, and they can give you guidance that really can help you find that light in the tunnel.

If you need support from our Families First team, you can get in contact with them here: www.rsbc.org.uk/how-can-we-help/for-families/