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UK mother creates a ‘Room-of-Her-Own’ for daughter with rare visual disability

Kirstie Dallas with Esme
Photo: Kirstie Dallas

Kirstie Dallas’ dream finally came true when she was able to make an incredible sensory room, on a budget, for her visually disabled daughter. Dallas, 27, from Belfast, lives with her two children: Carter, five, and Esmé, four.

Her daughter, Esmé, has severe Cerebral Visual Impairment (CVI); a disorder that stops the brain from processing information from the eyes back to the brain.

CVI is caused from a rare neurological genetic disorder called pontocerebellar hypoplasia. “She’s (Esmé) registered blind…even though her eyes are perfectly healthy, her brain is not. It is a life-limiting disease that affects around 100 children in the world, and there is no cure,” Dallas said.

“She has always been tube-fed, and is hooked up to an oxygen saturation and heart rate monitor around the clock. On top of this, she has epilepsy, dystonia, microcephaly, and global developmental delay. She uses oxygen day and night, needs a suction machine to control her saliva and is prone to upper respiratory infections. We were told that she wouldn’t live to age two, but Esmé is now four years old,” her mother said.

“I wanted Esmé to have her own space to chill away from the background noise of the madness that’s always going on in my house,” she said.

A fundraiser helped raise enough money to fund the sensory room and, for £300, Dallas created the amazing space for her daughter.

She said, “After Boxing Day 2020, I was fed up looking at the mess underneath my stairs and I thought that I could use that wasted space for the den. Firstly, I removed all the clutter from underneath the stairs. Next, I laid the carpet using an offcut that was leftover from carpeting my stairs a few months ago. I put foam mats from IKEA, which cost £22 each, over the top of the carpet and I also placed them on the walls, cutting them as needed to make them fit.”

“The mirrors cost £4 for four from IKEA and are fixed to the wall with the self-adhesive strips they come with. The two mood tubes are from Learning Space and cost between £70 and £120. I then added the bubble tube – you can find these in Asda, Argos, The Range,” Dallas said.

“I put the bubble tube on top of the mood light to create extra height so that Esmé could see it. I positioned it in the corner where I put the mirrors so that when it’s illuminated the reflection makes it appear brighter and makes the space look bigger too.”

The mother bought a UV lamp for £50 from Amazon, which came with UV crayons that she used to make some doodles on the walls.

She bought UV strips from Amazon (£12 for 12 pieces), fashioning some of them into a bespoke design for the ceiling.

Dallas then added UV stars and moons for an extra touch (from Leaning Space for £4.99 and £6.99 respectively). The super mother is so happy with the end result.

She said, “The sensory den looks better than I could have imagined. I absolutely love everything about it.”

“It’s all I’ve ever wanted for Esmé,” Dallas said, “as she can’t get joy out of many of the usual things that four-year-olds play.

She is so calm in the den that she can sit there for hours. Plus, it’s great for her visual, auditory, and tactile processing, as well as fine and gross motor skills.”

Dallas shared photos of her project to a budget DIY group on social media and has been overwhelmed by the response. The post has seen a ton of activity with 17k reactions and 1.4k comments.

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