Offering access to emotional and practical support: RNIB Eye Care Liaison Officers
Remi McDonald, age 7, is severely visually impaired from birth – she has Aniridia, Nystagmus and Cataracts in both eyes and also has Photophobia. Her mother Sukhi talks about Remi's sight condition and the invaluable support they have received from an ECLO (Eye Care Liaison Officer) at Birmingham Children’s Hospital.
Discovering Remi’s sight loss
“When Remi was born, my older daughter Ismae had just turned one, so there was a lot going on for me. I would describe motherhood as the most joyous and beautiful thing, but also a massive challenge.
As soon as Remi started to come out of that newborn sleepy phase, I noticed that she didn’t make eye contact with me. It was such a tough time, I honestly thought she must’ve been really upset with me. But 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.
Our ECLO Talia wasn’t in place then, we just had appointments with medics. We asked as many questions as we could, but at the same time didn’t quite know what to ask. Remi had to also be tested for WAGR Syndrome, as Aniridia meant she was predisposed to a kidney tumour. Thankfully, the test result was negative.
Had Talia been in place at the time, the whole experience would have been different - an ECLO would have bridged the gap between the medical side and the rest of life. It felt like there was always something missing. However, I gradually started to find my own way to build this ecosystem around my Remi.
Vital support from an ECLO
During a routine check-up last year, I asked for Remi’s certificate of visual impairment (CVI), to be updated to reflect all her eye conditions. I was told that it did require updating because her sight readings indicated she had gone from partially sight impaired to severely sight impaired. Bless Remi who was sitting right next to me squeezing my hand, I know she sensed this was very important news.
As a parent, you’re trying to manage your emotions, as your child is sitting with you in the same room. The 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.
We live in this able-bodied world that’s not equipped for people with disabilities. But with the right support and adjustments for people with varying levels of ability, then there’s room for us all. If Remi feels she is not able to do something in life, it’s because of barriers, prejudice or being excluded. I know that if I assume she can then she will believe she can. All we want is for Remi to live her beautiful life to its full potential