How RNIB is here for the defining moments in our lives
Sukhi and Remi talk to RNIB's ECLO (Eye Care Liaison Officer).
Thank you so much for all you do to support RNIB. You've already made a huge contribution to our work. We’d like to share with you another way you could give to our future work, if you feel it’s right for you. That’s by remembering RNIB in your Will. Please read on to find out more about this very special way of giving.
Sukhi and Remi's story
Supporting Sukhi and Remi during their defining moments.
Remi, aged seven, has a severe visual impairment. She has Aniridia, Nystagmus and Catracts in both eyes and also has Photophobia. Remi is long sighted, so wears glasses, and her depth perception is limited. In unfamiliar environments she is overly cautious of changes in colour, stairs and steps. Her mother Sukhi spoke to us about Remi's eye conditions and the invaluable support they have both received from the RNIB ECLO (Eye Care Liaison Officer) at Birmingham's Children's Hospital.
"When Remi was a tiny baby, I noticed that she didn’t make eye contact with me. I quickly realised something was up with her vision and raised my concerns. The midwife suspected that Remi had Nystagmus; hearing this made my heart sink.
"There was a long, anxious wait for an appointment with a doctor at the Birmingham Children’s Hospital. On the day of the diagnosis – we found out that not only did Remi have Nystagmus, but also Aniridia, and Cataracts in both eyes. The diagnosis was a massive blow, I was left not knowing what to do or how to feel. I just knew I had to protect my little girl.
“Years later, our consultant suggested I see an ECLO at the hospital.
“Talia was so welcoming, after meeting her I knew that she was the help that I needed. I started to feel much more positive. It was lovely to know that I could finally contact someone for practical and emotional support. The journey a parent goes through to ensuring they get the right support for their child can be very lonely.
“With Talia, I felt like I’ve made a new friend, because she’s so nurturing and though she has a lot of patients, makes you feel like you’re the only one. She helped me with Remi’s CVI, entitlements, signposting me in the right direction. Talia is really connected and open about her own sight condition which shows that she understands. Talia has a lovely room, where Remi is distracted by colouring and toys, whilst I can talk openly, it’s so important to have this space. Remi has also built a connection with Talia and looks forward to seeing her.
“Remi knows she has special eyes, that she’s powerful because of her voice, and that it’s good to be different. Remi is truly amazing and joyful, and I want her to know she can do anything she wants, and to encourage her to advocate for herself.”
Last year, RNIB...
- Helped more than 100,000 customers through our Sight Loss Advice Service
- Responded to more than 200,000 calls to our Helpline
- Suppported more than 60,000 patients with our Eye Care Liaison Officers (ECLOs).
We wouldn't be able to help so many people without the support of people who generously remember RNIB in their Will. To find out more about how you can help RNIB be there for blind and partially sighted people and their loved ones during the defining moments of their lives, please request a free Will Guide.
