Our world was closing in, now it’s more special than ever

Remi is one of this year’s Run For champions. If you’re taking part in our fundraising challenge, you might get to know Remi as she cheers you on! We speak to mum, Sukhi, to learn more about Remi’s story. 

If you were to meet Remi, you’d see a regular kid with a beautiful smile, big curly hair, and shiny pink glasses. She is so joyous and fun to be around. But Remi has these amazing ‘special eyes’ that make her different from regular kids.

When she was born, I was so happy. I had this gorgeous little baby. However, I realised quite early on that something wasn’t quite right. She wasn’t making eye contact with me, not even during feeding. At the time, I honestly believed she was upset with me. I didn’t know how to make things better.

I started relying on Dr Google which resulted in sleepless nights and a lot of upset. When babies are really young, their eyes are still developing, so I convinced myself that she just had delayed vision.

Staying positive through the diagnosis  

I quickly raised the alarm bells to a health visitor who suggested Remi may have nystagmus. This would cause rapid involuntary eye movements, affecting her focus and vision. It was really hard news to hear. She was eight weeks old when she got her official diagnosis.

The wait for her appointment was agonising. It turned out that as well as Nystagmus, Remi also had a rare eye condition, aniridia, where the iris (the coloured part of her eye) is missing, and cataracts in both her eyes.

All this means that Remi has a lower level of vision and it’s hard for her to adjust to bright or changing light levels. It also causes other parts of her eyes to be under-developed.

The ophthalmologist who spoke to me and my husband Marcus, was positive about Remi’s conditions. We left thinking that we should be feeling positive too, but inside, it felt like the world was closing in on me. I didn’t know how life would be and just wanted to protect my baby.

Now I can look back and see how important that time was. It was a massive learning curve. I also found Sense during that time, and Sense are a part of Remi’s childhood and an important part of her beautiful story.

Finding a home in Sense

I first heard about Sense when Remi was still just a few months old. I visited a Sense centre and they told me about the Sensory Explorers sessions run by a lady called Anne. So, I took Remi to the centre to find out more.

I felt a sense of belonging straight away. Anne who is such a wonderful lady introduced me to other parents who just ‘got it.’ It gave me perspective and reassurance.

For the children, the Sensory Explorer sessions are both action packed and calming. They enable children with complex needs to have fun, just like other children. This is so important.

I was able to take my other daughter too. Both sisters have great memories from that time – especially the messy play! The centre itself was an open and friendly space for us to just be, at a time when I was going through a scary part of my life. It’s lovely we had that, and that we still do.

Our relationship with Sense has helped Remi do new things, explore, create friendships, and grow in confidence. We’re so grateful for it. I want my little one to have the courage to advocate for herself because she will have additional challenges to overcome.

I also want Remi to always be proud of her differences and how she sees the world in her own unique way. I heard from one teacher that Remi wants to be a unicorn, “because it’s good to be different.”